Quaker Spaces and Accessibility: Part 2 of 2

Part 1 is available here:  http://aquakerwitch.blogspot.co.uk/2016/02/quaker-spaces-and-accessibility-part-1.html

Thinking beyond ramps, elevators, and hearing loops: some common access tools for people with “hidden” disabilities

This is a practical exploration of some common access tools and accommodations for people with “hidden” disabilities.  This list is not exhaustive, and it should also not be used an excuse not to talk with people about their access needs; it should be used as a starting place for thought, worship, and conversation.  I strongly recommend reading part 1 first. 

Transportation

·      Is there public transportation to the Meeting?  To the locations of committee meetings?  Is the public transit schedule such that someone can actually use it to get to and from Meeting events?  How far a walk are the most usable public transit stops? 

·      Is information about parking and public transit clearly available on the website and in printed materials?  Is parking available nearby?  How far a walk is it?

·      Does the Meeting subsidize transportation costs for people with disabilities (and other people in the Meeting) who may need it? 

Lighting

·      Is the Meeting community in touch with the kinds of lighting that do and don’t work for Friends with disabilities?  Are different forms of lighting available? 

·      Lighting needs to be bright enough for most people to see but without producing too much glare.  If your meeting space has windows, it’s often tempting to turn out the lights and rely on natural light alone.  For some people, that light will not be enough for them to see sufficiently; for others, the contrast and glare can trigger neurological symptoms.  Check first. 

·      Presentations: Rather than automatically turning out the lights during presentations to highlight the projector screen, ask what kind of lighting works best for the people present.  Being in a mostly-dark room with some bright light can trigger neurological symptoms for some people.  Keeping all the lights on can make it difficult for people with low vision or other vision difficulties to see the screen.  Having the lights on away from the screen, and off near the screen, works well for many people.  As always, checking with the people in the room is the best way to make sure their needs are met.  Ensure the people with the loudest voices are not the only people whose needs are respected.

·      Fluorescent lighting is a known trigger for a host of issues, including but not limited to seizures, migraines, headaches, and skin problems.  Some people tolerate fluorescent lighting better than others.  If people in your Meeting have difficulties, arrange for alternative lighting, such as halogen lamps, incandescent lamps, or LEDs.  If you are using fluorescent bulbs in regular fixtures, this can be as simple as changing the bulbs to another type.  If your building has overhead tube lighting, alternatives can be as simple as bringing in table or floor lamps, and not using the fluorescent overhead lighting.   

Bathrooms

·      Are bathrooms well-signed?  Can someone unfamiliar with the building find the bathroom quickly if they leave the Meeting room, social hall, or Business Meeting in a hurry? 

·      Are Friends easily able to leave the room to use the bathroom, take medication, or eat a snack, and easily able to return?  Are they discouraged from leaving or re-entering?  If you have doorkeepers, how do they handle this?  Do Friends frown when people get up, leave, and come back during worship, business meetings, or committee meetings?  What are the unspoken – or spoken – conventions around leaving and coming back? 

·      Does your Meeting have one or more all-gender bathrooms, and space where people can change clothes, which are ADA-compliant?  Do transgender and genderqueer people with disabilities have safe, accessible bathrooms and changing space?[1] 

·      A number of disabilities and disabling conditions require people to use the toilet frequently.  It can be very helpful to have bathrooms close to Meeting rooms, though this is not always something under our control. 

Seating

·      Is the Meeting community familiar with the different kinds of seating Friends need?  Are different kinds of seating available during worship, social time, Meeting for Worship with Attention to Business, and committee meetings? 

·      For some people, benches might be fine.  Some people need soft seating.  Some can’t use soft chairs and need a hard chair with back support.  Some people with asthma and other pulmonary problems can’t use upholstered furniture.  Having different kinds of seating available in worship but not Business Meeting, for example, communicates that Friends with disabilities are welcome in worship but not business.  Having different kinds of seating available in worship, social, and business spaces communicates that Friends with different needs are welcome in the full life of the Meeting and makes the Meeting more accessible to more Friends. 

Heating and cooling

·      Are the worship, social, and business spaces warm enough – and cool enough?  Spaces that are cold are often not accessible to people with chronic pain, arthritis, asthma and other pulmonary conditions, and neurological, orthopedic, and other disabilities.  Similarly, spaces that are too warm are also barriers to access.  To non-disabled Friends, a meeting space that is too cool or too warm is an inconvenience; to many disabled Friends, a meeting space that is too cool or too warm is inaccessible and means we can’t participate, or that if we do participate we will face consequences such as increased pain and disability. 

Timing and scheduling

·      Are the schedules for worship, business, and social events available in advance?  Does the community adhere to those schedules, especially with respect to break times and meals? 

·      People with various disabilities may need to use the bathroom more often, may need to eat at regular intervals, may need to time medication to food, may not be able to sit for extended periods, and more.  Asking, “Is it all right if we go on?” puts PWDs on the spot and forces us to ask for our access needs to be respected.  Adhering to schedules helps us plan and makes events more accessible to more people.[2]

·      Do the times for Meeting for Worship, Meeting for Worship with Attention to Business, and committee meetings work for people with disabilities?  Has the X Committee in your Meeting always met on the first Thursday night of the month, and always will? 

·      It may be traditional to hold Meeting for Worship on First Day morning, but having worship even once a month in the afternoon or evening might make it possible for people to come who otherwise can’t.  Scheduling Meeting for Worship with Attention to Business is always an extremely interesting process, and it’s all too easy for the voices of people with disabilities to get lost, for our presence to become less of a priority than that of other Friends.  If X committee always meets at night, Friends for whom night-time committee meetings aren’t possible may never even consider serving on X committee, and may never be asked, even if the Meeting very much needs their gifts there. 

·      How are late-comers welcomed? 

·      People with disabilities cannot always know how long it will take us to get ready or to get someplace, and those of us who rely on other people or on public transit to get to Meeting are not always in control of what time we arrive.  Shaming late-comers, treating lateness as a problem, and making late-comers sit in a separate area communicates that people with disabilities are not welcome, that it would be better if we hadn’t come at all than had come but arrived late. 

Microphones

·      Does your Meeting have a sound system?  Do people use it? 

·      A good sound system is an essential accessibility tool for many Meetings.  It’s very easy, and very tempting, to believe a meeting space is small enough, or people’s voices are loud enough, that everyone can hear.  Shouting does not, in fact, make it possible for everyone to hear; for many of us, it makes it harder.  Accessibility for Friends who are hard of hearing is not simply about volume; it’s about a whole host of factors.  Hearing loops do not serve all Friends and newcomers who are hard of hearing. 

·      It’s also very easy to assume that using microphones in Meeting for Worship will be disruptive, unwieldy, or too difficult.  There are a number of Meetings and other Quaker groups whose experience with the use of microphones during Meeting for Worship and Meeting for Worship with Attention to Business has been extremely positive, including Friends for Lesbian, Gay, Bisexual, Transgender, and Queer Concerns (FLGBTQC).[3] 

Fragrance

·      Is the soap in the bathrooms fragrance-free?  Is the space cleaned with fragrance-free products? 

·      Is it a Meeting policy to ask Friends and visitors to forego using fragranced personal care products, including perfume, cologne, aftershave, hair styling products, and lotions when coming to Meeting events, and not to use them on the premises? 

·      Is that policy clearly stated on the website, in signs on-site, and in printed and emailed announcements?  Are there periodic written and verbal announcements to remind Friends? 

·      How do Friends, and especially elders in the community and/or the equivalent(s) of Ministry and Counsel, intervene when people do wear or use fragranced products? 

·      Most commercially-available window cleaners contain chemicals which often trigger headaches, breathing difficulties, and neurological problems.  Many eco-friendly window cleaning products which contain ingredients such as vinegar and vegetable-based soaps are much less hazardous to people with disabling conditions.  These are also easy and inexpensive to make; ingredients and recipes are readily available on-line and in books. 

·      Please note that while many products marketed as eco-friendly are fragrance-free, not all of them are; many contain essential oils to make products smell “nice.”  The fragrances in essential oils can still trigger problems.  Look for explicitly fragrance-free products (not necessarily “unscented”).  It’s essential to read ingredients lists.

·      It’s important that keeping a space as fragrance-free as possible is everyone’s responsibility, not just that of people with disabilities or Friends with chemical sensitivities.  It’s ableist and unfair for expect a particular subset of Friends to carry the burden of removing an obstacle to their participation in the life of the Meeting, and in fact it creates another obstacle in and of itself.

·      Please do not, ever, ask someone with fragrance or chemical sensitivities to smell something and tell you whether it’s all right.  Doing so is asking them to risk being made very ill, not being able to get home safely, and being disabled for days.  Read labels. 

·      A number of Quaker and non-Quaker organizations and individuals keep lists of fragrance-free personal care and cleaning products on-line, including Friends General Conference[4] and this author.[5] 

Food

·      When providing food or at potlucks, does the Meeting make provision for a wide range of food needs, rather than what is perceived as the lowest common denominator?  For potlucks, are Friends encouraged to bring a variety of foods? 

·      When life-threatening allergies exist, does the Meeting insist Friends not bring foods containing those specific allergens?

·      Is food labeling part of the Meeting’s culture and expectations?  Are there supplies available so people who have not made labels at home can do so on-site?  Do Friends commonly help make labels for people for whom writing is difficult or painful, or who can’t see?

·      Does everyone understand it’s critical not to mix serving utensils without a thorough washing? 

·      Do Friends respect each others’ food needs? 

·      Avoid commenting on and questioning food preferences and restrictions. Don’t ask someone why they can’t eat something, don’t tell them that someone else you know who has the same disability or medical condition can eat the thing they’re not eating, don’t tell them their inability to eat something is a fad, don’t tell them the food they’re not eating won’t really hurt them.  That’s ableist and disrespectful.  Most of all, don’t try to convince people to eat things they say they can’t eat, and do not deliberately serve them food or drink containing something they have said they can’t eat.  That’s dangerous. 

Managing dust and mold

·      Are your worship, social, and business spaces cleaned regularly, with fragrance-free products?  Are the cushions vacuumed?  Are moisture and mold managed? 

·      Dust and mold are problems for people with allergies, neurological and pulmonary conditions, and more.  There are a number of lovely Meeting houses that are inaccessible to people with disabilities and chronic illnesses because of mold and dust problems. 

Names

·      Are name tags available, and do people wear them consistently? 

·      Is it a Meeting practice to share names verbally at the rise of Meeting, or at the beginning of Meeting for Worship with Attention to Business, committee meetings, and other Meeting events, even if it’s believed everyone knows each other? 

·      Some people with learning disabilities, memory problems, or neurological disabilities will never be able to learn everyone’s names, no matter how long they’ve been part of a Meeting community and no matter how hard they try.  They may have known you for twenty years and can remember everything you’ve told them about your garden, they may know your name most of the time, but at any given moment they may not be able to pull your name from memory.  People who cannot recognize faces might or might not be able to discern people’s names from other cues.  Name tags are an access tool: they make it possible for many people with disabilities to use people’s names, literally giving them access to names they wouldn’t otherwise have.

·      People who cannot see or who have low vision have no way know who is present at Meeting unless people’s names are shared verbally.  In some meetings, whether small or large, it is the custom to go around the room at the rise of worship and share everyone’s names.  This helps people with neurological, memory, or learning disabilities as well as people who can’t see everyone. 

Noise

·      Are side conversations discouraged during announcements, Meeting for Worship with Attention to Business, and committee meetings, so that everyone may hear? 

·      Are the people speaking during announcements, Meeting for Worship with Attention to Business, and committee meetings clearly visible to everyone in the room who is able to see?  Are there clear lines of sight so that people who are hard of hearing or Deaf/deaf are able to see people’s faces and lips when they are speaking?

·      Are there quiet spaces available at the rise of Meeting, and during social time and other events, for people for whom noise is painful, overwhelming, or may trigger a disabling medical event? 

·      It can be very difficult for people who have sensory issues and/or who are hard of hearing to hear what is being said when there is background noise or conversation, including side conversations.  People who have sensory and/or other neurological issues, or who use hearing aids, can have real difficulty in noisy spaces or spaces with a lot of background noise.  Discouraging side conversations during announcements and other business, and making sure quiet spaces are available during social time, makes Meeting more accessible to more people. 

·      Are ultrasonic rodent repellents turned off during Meeting for Worship, Meeting for Worship with Attention to Business, social time, committee meetings, and other events? 

·      Ultrasonic rodent repellents are known to cause headaches for many Friends. 

Touch

·      Does the Meeting practice consent culture?[6]  Do people ask before touching each other, whether putting a hand on their arm or giving a hug?  Is “No” a socially-acceptable answer?  Are Friends welcoming if someone waves or blows kisses instead of hugging? 

·      Are children encouraged to decide for themselves whether to hug or kiss adults, or to accept hugs or kisses from them?  Are children taught to ask before touching adults or other children, even in affection?

·      For many Friends with who have sensory issues, balance problems, neurological conditions, orthopedic conditions, chronic pain, other disabilities, and/or who are survivors of interpersonal violence, touch can be painful, overwhelming, or actually dangerous. 

·      People with disabilities have a higher likelihood than non-disabled people to have experienced assault. 

·      Non-disabled people often touch disabled people without their consent when trying to be helpful: for example, moving a blind person to where they believe that person needs to be or is trying to go; moving someone’s wheelchair; etc.  This is an invasion of personal space.  It can also be actively dangerous for people with various disabilities and disabling conditions.  Always ask before touching.  Never “help” a PWD without asking for and gaining consent first.

·      How does your Meeting cue the end of worship? 

·      How do people who are Deaf/deaf, blind or have low vision know Meeting has ended? 

·      If your Meeting shakes hands, what transition is there between worship and hand-shaking for people who cannot go directly from worship to touching other people? 

·      Are alternative greetings besides hand-shaking available and welcome for people for whom going from worship to touching means sensory overstimulation or is unsafe, or who simply don’t like touch?  Are Friends welcoming and supportive if someone waves or nods instead of shaking hands? 

Announcements

·      Are printed and emailed announcements available? 

·      These help people with auditory processing difficulties, poor short-term memory, and cognitive problems, people who have low vision or are blind and use screen-readers on their computers, people who are hard of hearing, and others. 

Signs

·      Are there clear signs in the building?  Can people with short-term memory problems who may not remember verbal directions to the Meeting room, social hall, or bathrooms still find those places? 

Child care / children’s programming

·      Is child care available for young children with disabilities?  Is the program for older children accessible to children with disabilities, whether they can’t sit still, have sensory processing difficulties, use a wheelchair, have developmental disabilities, or have other access needs?

Movement during worship

·      Are Friends encouraged to move quietly during worship when they need to?  Are Friends supported in doing handwork, reading, writing, standing, walking, wiggling, or fidgeting to stay centered in worship? 

·      Are Friends easily able to leave the room to use the bathroom, eat, or take medication, and easily able to return? 

·      Do Friends accept noise from medical equipment, service animals, or adults or children getting up, turning pages of a book, etc., as a blessing of being in beloved community?  Is worship deep enough that such noise is absorbed without disturbance?

Ramps, elevators, and hearing loops revisited

·      This may seem obvious, but: 1) Do they work?, and 2) Is the entire space accessible, not just the Meeting room? 

·      Are there automatic doors?  Can someone who uses a wheelchair get into the building, get into worship space, and also get into social space and business space?  Does the elevator fit a wheelchair?  Can someone who uses a wheelchair actually use the bathroom? 

·      Does the hearing loop work?  Where is it available?  Are events always held in spaces where it is available and working? 

Availability of information

·      Is information about accessibility freely available on-line and in printed materials, where both established members of the community and newcomers can find it easily?  Does someone already need to be a member of the community in order to have their access needs met, to be welcome if they have a disability?

·      Are minutes and materials for Meeting for Worship with Attention to Business available electronically? 

·      This is helpful for people who use screen readers.  It also helps people who cannot always be present in person to stay active in the life of the community. 

·      Is your website screen-reader compatible?[7]

·      Does your website have pop-ups? 

·      Many websites hosted on free providers have pop-ups, which often make it difficult for people with visual or motor issues to navigate web sites. 

·      Having good information available on your website, including newsletters and minutes, makes it easier for Friends with different disabilities to participate fully in the life of the Meeting.  If you do not want minutes to be available to the public, they may be password-protected using various tools, including the Quaker Cloud.[8]

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[1] Gender-neutral changing space is an issue of safety and accessibility for people who are transgender, non-binary, and genderqueer.  

[2] This is also an issue for families with children and/or who are caring for adult loved ones. 

[3] For more information, contact Co-Clerks via the webform at http://flgbtqc.quaker.org/contactus.html
 

[4] http://www.fgcquaker.org/connect/gathering/accessibility/fragrance-free-products
 

[5] Please see http://stasa.net/resources/fragrance-free-resources/ for some of many fragrance-free organizations, events, and products.  

[6] An excellent resource for consent culture in spiritual communities is the anthology Pagan Consent Culture: Building Communities of Empathy and Autonomy, edited by Christine Hoff Kraemer and Yvonne Aburrow (Hubbardsville, MA: Asphodel Press, 2015).  The anthology includes work by several Quaker authors.  Available in print or as an e-book at http://www.paganconsentculture.com/. 

For a shorter introductory exploration of consent culture within Quaker contexts, see “Some Experiences with a Culture of Consent and Radical Inclusion,” available at http://aquakerwitch.blogspot.co.uk/2014/04/some-experiences-with-culture-of.html.  

[7] Websites on FGC’s Quaker Cloud tool are not yet fully screen-reader compatible, but have many features that work well with screen readers.  The Quaker Cloud team strongly welcomes Meetings' interest in getting the Quaker Cloud fully optimized for screen readers.  Contact them at cloudsupport@fgcquaker.org or 215-561-1700, or see http://www.fgcquaker.org/services/quaker-cloud for more information. 

[8] For more information, please see http://www.fgcquaker.org/services/quaker-cloud or call 215-561-1700. 

Quaker Spaces and Accessibility: Part 1 of 2

How can Friends’ Meetings and organizations be more accessible to, and inclusive of, people with disabilities?

This article is by definition incomplete.  I cannot speak for all Friends with disabilities.  There are issues which I don’t have space to address here, which I am not the best person to write about, and/or which other Friends with disabilities have already spoken and written about (including access for Deaf/deaf and/or blind Friends).  There are other accessibility issues which are different from disability access, though they often intertwine, such as financial accessibility, and accessibility for families with children of different ages or family members with disabilities.

This article is written from the perspective of a Friend with disabilities, in consultation with other Friends with a number of different disabilities.  It’s a non-exhaustive list of opportunities for thought, worship, and action.  I expect it will challenge many readers.  Most of all, it’s an invitation to think about disability, accessibility, and inclusion in different ways than perhaps you already do. 

Accessibility and inclusion are about all of us.  

 About Quaker values and testimonies, especially equality and community, but also about peace, stewardship, and integrity.  Accessibility and inclusion are about living our commitment to justice not just in the larger world, but right here within our own Religious Society of Friends. 

Accommodations and access tools are not “special treatment” or “special favors” some people ask for and might be granted.  They’re how we collectively make it more possible for everyone for everyone to be present and to have equal access.  Making sure we can all participate fully in the life of a Meeting is part of building Beloved Community; accessibility is part of our collective commitment to this.  It’s something we do together, for all of us. 

In our Meetings, we often think of PWDs as Other People, “out there,” and of accessibility being about those Other People, not about us ourselves.  Yet there are people with disabilities already present in our Meetings; we often just don’t recognize it.  Frequently the most common disabilities or disabling conditions in our Meetings are not the kinds of things many of us are used to thinking of when we think of disability and accessibility.  We may be used to thinking of people needing wheelchairs and ramps, walkers and elevators, hearing aids and loop systems, but not so much about “hidden” disabilities. 

People with disabilities (PWDs) face discrimination and oppression in ways similar to those which members of other minorities do.  When it comes to disability, we call that discriminatory, oppressive set of attitudes and behaviors ableism.  In the US and the UK, we are all raised in a culture which is ableist, and which teaches all of us to be ableist – to discount PWDs and our rights, needs, and experience. 

So how do we go about making our Meetings more accessible to the people who are already here, and the Friends we don’t know yet?  Here are some ways to challenge our conscious and unconscious ableism. 

Start in our own Meetings.   We start by listening to the people who are already present in our Meetings.  This means finding out who has access needs we don’t already know about.  “What do you need to make attendance at Meeting for Worship and full participation in the life of the Meeting possible for you?” is a great question.  Because we don’t know who has disabilities and who doesn’t, it’s important to ask everyone this question.  It’s also crucial for us to focus on access both to worship and to service opportunities – access to worship alone is not access to full participation. 

Ask. “What do you need?”

We do not need to understand someone’s disability, or even know what their disability is, in order to work together for full accessibility.  Avoid such questions as, “What’s wrong with you?,” “What’s your disability?,” “What’s your diagnosis?,” “At your age?,” or even, “Why do you need that?”  

Do ask, “What do you need?”

It’s very tempting to ask for personal medical information; please don’t.  Those personal details are private; they’re not actually anyone’s business.  It’s unfair and ableist to ask for personal medical information as a condition for access to participation.  You probably wouldn’t like it if someone insisted you explain in detail why you need a bathroom, or wanted to know the details of your latest colonoscopy, before telling you where the bathroom is, or giving you the key.  Asking people with disabilities for personal information has an effect of “othering”: it further separates “us” from “them” by focusing on what’s “wrong” and “different” about a disabled person.  That kind of asking also puts the non-disabled person and a non-disabled perspective in the center, rather than putting the person with the disability, and an access perspective, in the center.  Asking for that information also makes it very easy to focus on the disability or diagnosis rather than the access need, and that’s a distraction.

Disabled people usually know what we need; non-disabled people don’t need to figure it out for us.   You don’t actually need to know what our specific disability is, or what our diagnosis or chronic condition is, in order to partner with us on access.  You need – and we, as a whole community, need – to know what people with disabilities need in order to participate fully in our community.  That’s all. 

Listen.  Listen to the answers.  It’s very easy to come up with an endless list of reasons why the Meeting can’t provide another kind of seating or change the lighting or change when or where a committee meets or help with transportation or why a certain access tool isn’t okay.  Just listen.  Don’t keep a running tally in your head about why those accommodations are impossible.  Don’t defend why the Meeting doesn’t do them.  Don’t argue.  Just listen. 

Believe.  Listen to the answers, and believe people with disabilities that the accommodations and access tools we use are necessary.  We know this territory far better than non-disabled people or people with other disabilities, we know what we need, and we are not making this up.

Think beyond ramps, elevators, and hearing loops.  Many disabilities are not obvious to non-disabled people or to people with other disabilities.  The needs of people who use other kinds of access tools are just as valid as the needs of people who use ramps, even if we’re not as familiar with them. 

Embrace the ADA (Americans with Disabilities Act).  I’ve lost count of how many times I’ve heard  Meetings and other Quaker (and other religious) organizations cite being exempt from the ADA as the reason they can’t meet basic access needs and won’t even discuss them.  Don’t use being exempt as an excuse.  Doing so communicates that being exempt from the law is more important to you than Friends are.  The ADA can actually provide Friends with all sorts of very useful tools and ways of thinking about access – it can help get us out of the ableist boxes we’ve gotten stuck in without realizing it. 

Don’t be limited by the ADA (Americans with Disabilities Act).  Don’t let the ADA limit what you are willing to consider “reasonable accommodations.”  Use it as a springboard. 

Don’t hide behind not having enough money or enough people.  Over and over I’ve heard Quaker (and other) groups use being all-volunteer and not having much money to justify the lack of basic accessibility for Friends with disabilities, and even to refuse to discuss basic access needs. 

There’s a not-quite-joke in disability communities that “Attitudes are the real disability.”  This reflects the experience of many PWDs that there are times when it’s just as hard, if not harder, to cope with people’s ableist attitudes than physical barriers – that how people think, and the behaviors they then engage in, create barriers just as impassible for us as physical ones. 

It does not cost any money to challenge and transform our own ableist attitudes, behaviors, and ways of thought.  What’s more, there are many accessibility tools we can put in place for little or no cost.  Doing these things does require commitment to the work and our willingness to be transformed.  By opening ourselves and listening to people with disabilities about what we need, we can be creative together about how to meet many different access needs. 

Understand that many disabilities and disabling conditions are variable.  Someone may not always need an access tool or accommodation they’ve talked about, but without it, Meeting is not fully accessible to them.  Someone may not always be able to come to Meeting even when a specific access tool is available, but without it, they definitely can’t come.  Don’t fall into the trap of “We made this accommodation and you weren’t here two weeks in a row, so we stopped,” or, “We put a soft chair in the Meeting room but you sat on a bench last week, so since you don’t really need it we moved it back to the library,” or, “You cuddled a child with fragranced hair products last week and you were okay, so we’ve stopped asking people not to wear fragrance,” or, “You didn’t [do handwork / use a fidget tool / do the thing you said you needed] during worship last week, so you don’t really need it.” 

Christine Miserandino’s “Spoon Theory”[1] is one helpful way to understand the experience of many disabled people and people with disabling conditions when it comes to the variability of our disabilities and of our resources. 

Put very simply, imagine that when you wake up every morning, you have a certain number of spoons.  Literal spoons, the kind you stir your tea or coffee with.  Anything and everything you do costs you some number of spoons – getting out of bed, taking a shower, getting dressed, eating breakfast, putting your dishes in the sink, getting to the bus/car, getting in the bus/car, getting to Meeting, getting from the bus/car to Meeting, getting into the building, hanging up your coat, finding a seat, sitting down, and so on.  When you’ve spent them all, you can’t do anything else that day.  Now imagine that first, you never know how many spoons you’re going to wake up with, and second, you never know how many spoons each of those activities will cost today – because both those things change every day, and sometimes in the middle of a given day. 

While Spoon Theory does not represent the experience of all disabled people, it is very familiar to many of us. 

Education.  Have a disability and accessibility etiquette presentation, by an expert, once a year.  Local advocacy agencies will be happy to do this for the Meeting; people within your Meeting may have this expertise themselves, or have connections within the advocacy community.  Make sure the group in the Meeting who plans these events includes disabled people and non-disabled people: do not do anything about disability without including people with disabilities, but do not expect the burden of the work to fall exclusively or even primarily on them. 

Don’t focus on how hard this is for you.  Please don’t tell someone with a disability how inconvenient, distracting, complicated, hard, etc., this is for you.  Most non-disabled Friends have to deal with someone else’s disability a few times a week at the most.  Disabled Friends have to manage their disabilities 24/7.  Telling someone with a disability how problematic their disability is for you is ableist: it’s asking them to take care of you because their disability is a problem for you and/or because society isn’t accessible.  It’s akin to complaining to a woman about how hard it is for you as a man when she won’t go certain places with you at night, or to your queer friends who are getting married about how hard it is for you as a straight person when your family or co-workers say you’re going to hell for coming to their wedding. 

Non-disabled privilege exists.  Please don’t complain to disabled people when you are confronted with it. 

“Comfort In, Dump Out” Ring Theory[2] may be helpful here.  Here’s a summary: 

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order…

Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.

Everyone else can say those things too, but only to people in larger rings...

Comfort IN, dump OUT.

This works for on-going issues like disability and oppression as well as shorter-term crises like health emergencies.  The person with the disability or chronic illness is in the center ring.  If you are a non-disabled person, you are by definition in another ring further out.  You and your experience are not in the center; it’s important not to imagine you’re in a smaller ring than you are.  Dump out, not in. 

Think about economic access.  People with disabilities overall have lower incomes, higher unemployment rates, and significantly higher rates of poverty than non-disabled people.  How do PWDs in your Meeting get to Meeting?  Subsidize bus fare, parking, or cab fare.  (Not everyone with a disability qualifies for reduced public transit fares.)  Make child care available for committee meetings and other Meeting events, or subsidize child care at home.  Make sure this information is freely available on your website and in paper materials so Friends can find it when they need it, and so newcomers know they’re welcome, too.  Make sure that people are not in effect required to have a certain level of income in order to participate in the life of the Meeting.    

Be proactive.  I hear things all the time like, “Nobody who needs this accommodation ever comes to our Meeting, so we don’t need it,” and, “We’ll do it if someone asks.” 

Imagine most people in the US can fly, you can’t, and you have to ask – every single time you leave your house, every single place you go, every single day of your life – if the place you are going has steps.  And then you have to explain why steps are necessary.  And ­then you have to explain how to build them.  Every. Single. Time.

Forcing people to ask for common accommodations and access tools communicates strongly that they’re not welcome unless they need only the accommodations you already provide, or that people with certain disabilities are welcome but not others – even if that’s not your intent.  People who use wheelchairs are welcome; people with asthma or Ehlers-Danlos Syndrome or chronic pain are not. 

Constantly asking for accommodations and access tools is exhausting.  The asking is in and of itself another barrier, forcing the disabled person to spend spoons[3] – time, energy, and cognitive resources – they could be spending on coming to worship, committee service, or even activities of daily living.  Nobody wants to be forced to choose between asking for an accommodation for the umpteenth time so they can participate in something, and taking a shower. 

Respect people’s access tools.  Don’t ask them to justify them, don’t tell them their tools bother you, don’t ask them to explain.  Respect that people are doing what they need to do to participate in Meeting. 

If someone comes to Meeting with a service dog, don’t ask them why; don’t tell them how distracting it is to have a dog in Meeting.  Respect that having a service dog with them is necessary for them to be there.  If someone comes to meeting with an oxygen compressor, don’t tell them the noise it makes disturbs your worship; respect that they have the same right as you do to come to worship, and that they really can’t worship if they can’t breathe.  If someone gets up and goes to the back of the room so they can move around, smile at them and don’t say anything about it; respect that they are doing what they need to do to worship.  If someone leaves the room and comes back, smile at them when they come back, and don’t expect them to talk about it after; respect that they’re doing what they need to do.  If someone does handwork during worship or a committee meeting, respect that they’re using an access tool that makes it possible for them to be there; don’t tell them if it bothers you or distracts you, and don’t ask them to sit in the back row where you can’t see them.  If someone feeds their five-year-old from a bottle during social hour or a shared meal, don’t comment and don’t judge; assume they are doing what their child needs in order for Meeting to be accessible.  If someone doodles, or writes, or reads, if someone fidgets with an object, assume they’re doing what they need to do.  It has nothing to do with you – and it also has nothing to do with whether or not they’re a “good Quaker.”

(All these examples are taken from real life.) 

Some thoughts in conclusion 

Use your ally muscles.  In particular, listen and believe. 

Worship, worship, worship.  Together. 

It’s not a competition.  We are Friends.  Our pie is big enough to feed all of us.  If we are grounded in worship and love, and if our decisions and actions are grounded in worship and love, we can make this work for all of us. 

Part 2 is available here:  http://aquakerwitch.blogspot.co.uk/2016/02/quaker-spaces-and-accessibility-part-2.html

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[1] Christine Miserandino, “The Spoon Theory,” But You Don’t Look Sick, http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.  

[2] Susan Silk and Barry Goldman, “How Not to Say the Wrong Thing,” LA Times, April 7, 2013, http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
 

[3] Ibid.