Sunday, February 28, 2016

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. 

[1] Christine Miserandino, “The Spoon Theory,” But You Don’t Look Sick,  
[2] Susan Silk and Barry Goldman, “How Not to Say the Wrong Thing,” LA Times, April 7, 2013,
[3] Ibid.

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