Disability Visibility – 3/12/23

December 2, 2023 · by kensin · in Uncategorized

Musical Prelude: The Lark in the Clear Air – arr. Christopher Ball (played by Benjie del Rosario & Andrew Robinson)

Opening Words: ‘We Gather Here as Individual People’ by Barbara Hamilton-Holway (freely adapted)

We gather here as individual people
in all our glorious variety – together –
across generations, young and old;
of all genders and sexualities;
temporarily able and disabled;
all the colours of humanity;
theists, humanists, agnostics;
each working out how to live
and making meaning as best we can.
We meet here to share the journey.

We gather here as a community of people
who are more than these categories too.

We gather here—each ministering to the other,
meeting one another’s strength, encouraging wholeness.

We give thanks for this extraordinary blessing—the gathering together
of separate, unique individuals as one whole, one body, our church.

Here may our minds stretch, our hearts open, our spirits deepen,
as we hear each other’s stories, what life is really like for each of us.

Here may we acknowledge our struggles and be ever stirred by love’s infinite possibilities.

We are gathered, just as we are, and ready to worship together.

Words of Welcome and Introduction:

These opening words – adapted from some by Barbara Hamilton-Holway – welcome all who have gathered this morning, for our Sunday service. Welcome to those of you who have gathered in-person at Essex Church and also to all who are joining us via Zoom from far and wide. For anyone who doesn’t know me, my name is Jane Blackall and I’m Minister with Kensington Unitarians.

This morning’s service is titled marks the International Day of Disabled People and I’ve given it the title of ‘Disability Visibility’ – a title that’s nicked from the book of the same name edited by Alice Wong – she’s a fantastic powerhouse of disability justice activism and I’ve put a few words on the front of the order of service which hopefully set the tone for today’s explorations (and those words are on the website along with the text of the whole service if you’re joining via zoom). She writes: ‘To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled. Disability is mutable and ever-evolving. Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.’ Words by Alice Wong.

So in the next hour, we’ll reflect on disability, and how it can potentially impact all our lives, with help from Michaela von Briztke and Karen Hill-Jones who each offer their own personal reflections.

Let’s pause, and check in with ourselves, before we go any further. How are you doing – in body, mind, and spirit? Maybe you need to take a conscious breath or two to settle in. Maybe it would help to stretch – shake off any physical tension you are carrying. Or maybe you could do with intentionally setting aside any worries that are bouncing around your brain. Be here now, as best you can.

Lighting of Chalice and Advent Candle: ‘Our Connection and Uniqueness’ by Adam Slate

Let’s light our chalice flame now, as we do each week. This simple ritual connects us in solidarity with Unitarians and Unitarian Universalists the world over, and reminds us of the proud and historic progressive religious tradition of which this gathering is part.

(light chalice)

We gather this morning as one community,
A community united by common ideals:
Love, justice, diversity, freedom, equity, mutual care.

Yet look around; think about who is gathered here.
Become aware of the beloved souls all around you.
Each an individual; every one of us with our own
particular story, needs, strengths, and faults.

We light our chalice today honouring our common connection
And also the uniqueness that lives within each of us. (pause)

And let us light our Advent candle too. We’re going to light the first candle for the second time!

As some of you already know I got a bit ahead of myself last week and unilaterally declared it to be Advent a week early… but, as I said last week, traditionally the first candle represents hope. And, God knows, life is tough, we could all surely do with an extra helping of hope these days. So may we know hope, this Advent season, hope for transformation of all the world’s suffering.

(light advent candle)

Hymn 193 (purple): ‘We Laugh, We Cry’

Let’s sing together now. Our first hymn is number 193 in your purple books, ‘We Laugh, We Cry’, it’s a lovely (quite long) hymn about what it’s like to be together in community. For those joining via Zoom the words will be up on screen. Feel free to stand or sit as you prefer. Sing up as best you can!

We laugh, we cry, we live, we die; we dance, we sing our song.
We need to feel there’s something here to which we all belong.
We need to feel the freedom just to have some time alone.
But most of all we need close friends we can call our very own.
And we believe in life, and in the strength of love;
and we have found a need to be together.
We have our hearts to give
we have our thoughts to receive;
and we believe that sharing is an answer.

A child is born among us and we feel a special glow.
We see time’s endless journey as we watch the baby grow.
We thrill to hear imagination freely running wild.
We dedicate our minds and hearts to the spirit of this child.
And we believe in life, and in the strength of love;
and we have found a time to be together.
And with the grace of age,
we share the wonder of youth,
and we believe that growing is an answer

Our lives are full of wonder and our time is very brief.
The death of one among us fills us all with pain and grief.
But as we live, so shall we die, and when our lives are done
the memories we shared with friends, they will linger on and on.
And we believe in life, and in the strength of love;
and we have found a place to be together.
We have the right to grow,
we have the gift to believe
that peace within our living is an answer.

We seek elusive answers to the questions of this life.
We seek to put an end to all the waste of human strife.
We search for truth, equality, and blessed peace of mind.
And then we come together here, to make sense of what we find.
And we believe in life, and in the strength of love;
and we have found a joy to be together.
And in our search for peace,
maybe we’ll finally see:
even to question truly is an answer.

Candles of Joy and Concern:

Each week when we gather together, we share a simple ritual of candles of joy and concern, an opportunity to light a candle and share something that is in our heart with the community. So we’ve an opportunity now, for anyone who would like to do so, to light a candle and say a few words about what it represents. This time we’re going to go to the people in the building first, and take all of those in one go, and then I’ll call on the people on Zoom to come forward.

So I invite some of you here in person to come and light a candle and then if you wish to tell us briefly who or what you light your candle for. Please do get up close to the microphone as that will help everyone hear (including the people at home). You can take the microphone out of the stand if it’s not at a good height and have it microphone pointing right at your mouth. And if you can’t get to the microphone give me a wave and I’ll bring it over to you. Thank you.

(in person candles)

And if that’s everyone in the room we’ll go over to the people on Zoom next – you might like to switch to gallery view at this stage – just unmute yourselves when you are ready and speak out – and we should be able to hear you and see you up on the big screen here in the church.

(zoom candles)

And I’m going to light one more candle, as we often do, to represent all those joys and concerns that we hold in our hearts this day, but which we don’t feel able to speak out loud. (light candle)

Time of Prayer & Reflection: based on words by Eila Forrester

Let’s take those joys and concerns into an extended time of prayer. This prayer is based on some words by Eila Forrester. You might first want to adjust your position for comfort, close your eyes, or soften your gaze. There might be a posture that helps you feel more prayerful. Whatever works for you. Do whatever you need to do to get into the right state of body and mind for us to pray together – to be fully present here and now, in this sacred time and space – with ourselves, with each other, and with that which is both within us and beyond us. (pause)

Spirit of Life, God of All Love, in whom we live and move and have our being,
we turn our full attention to you, the light within and without,
as we tune in to the depths of this life, and the greater wisdom
to which – and through which – we are all intimately connected.
Be with us now as we allow ourselves to drop into the
silence and stillness at the very centre of our being. (pause)

We gather here to be quiet and to pray, to find a time for our inner selves,
our souls and spirits which lie hidden and often neglected within us.

Some of us, this day, will feel empty and tired, grey and listless.
But emptiness and tiredness are also prayer, a cry for spiritual nourishment,
and an aching need for soothing. refreshment, and the strength to go on.

Some of us feel alone, aware of our need for someone to love us.
This too is prayer without words, a longing and a sorrow which seeks
for the healing spirit of love, the embrace of God’s concern for us
in spirit and in soul, and in the practical hands of caring people.

Some of us are happy enough, some content,
some have hope and plans for tomorrow:
all these are prayers – prayers of giving, prayers of gratitude,
prayers of creating thought and dreams.

So let us gather with our wordless prayers –
prayers of our inner selves, our inner truth.
May God be with us in these prayers, sustaining them
and enabling us to grow more aware of our wordless selves.
May we be aware of the waters of our own spirit
which are always there for us to drink
if we will sit still, wait, and listen. (pause)

And in a good few moments of shared silence now,
may we speak inwardly some of those deepest prayers of our hearts —
maybe something in our own life or the life of the world is causing us sorrow and grief –
maybe we are feeling full of gratitude, and feel moved to give thanks for our blessings – let us each lift up whatever is on our heart this day, and ask for what we most need. (longer pause)

Spirit of Life – God of all Love – as this time of prayer comes to a close, we offer up
our joys and concerns, our hopes and fears, our beauty and brokenness,
and we call on you for insight, healing, and renewal.

As we look forward now to the coming week,
help us to live well each day and be our best selves;
using our unique gifts in the service of love, justice and peace. Amen

Hymn (on sheet): ‘Break Not the Circle’

Let’s sing together again now. Our next hymn is on your hymn sheet: ‘Break Not the Circle’. This is one of my favourites – the tune is quite mournful – but the words are really beautiful and I think they articulate something of what it is we’re trying to create together in beloved community. The words will be up on screen as usual. Feel free to stand or sit as you prefer.

Break not the circle of enabling love
Where people grow, forgiven and forgiving;
Break not that circle, make it wider still,
Till it includes, embraces all the living.

Come, wonder at this love that comes to life,
Where words of freedom are with humour spoken,
And people keep no score of wrong and guilt,
But will that human bonds remain unbroken.

Join then the movement of the love that frees,
Till people of whatever race or nation
Will truly be themselves, stand on their feet,
See eye to eye with laughter and elation.

In-Person Reading: ‘Hiddenness and Visibility’ by Julia Watts Belser (excerpts)

Our reading today is longer than usual – about five minutes, I think – but it’s important. It’s from an excellent book by Julia Watts Belser, titled ‘Loving Our Own Bones: Rethinking Disability in an Ableist World’, and it’s going to be one of the books we look at in more depth in our new ‘Better World Book Club’ in the spring. The excerpt I want to share today is from a chapter on ‘Hiddenness and Visibility’.

Disability is a broad umbrella category, one that encompasses a wide range of experiences. When I use the term “disability”, I include physical and sensory disabilities, cognitive and intellectual disabilities, mental health disabilities, and long-term health conditions like chronic pain and chronic fatigue. The way I use disability doesn’t depend on having a diagnosis. Some of us pursue diagnosis, while others flee from it. Some of us go for years without recognition from medical establishments.

Disabilities affect bodies and minds in a thousand different ways. Some are present at birth, while others are acquired over the course of a life. Some disabilities change over time, while others are fairly static. Some disabilities are obvious at first glance, but many more are not immediately apparent. I’m a wheelchair user, so my own disability is hyper-visible. The wheelchair is ubiquitous as a sign and signal of disability. Whenever I roll into a room, I often feel a frisson of awareness pass through the group. It’s as if, through my wheels alone, disability has suddenly entered the building.

But that’s a lie. Statistically, the majority of disability experiences aren’t apparent at first glance. Diabetes, depression, hearing loss, arthritis, dyslexia – all these experiences fall within the category of disability – but they often pass without notice. Certain factors make disability more likely to register. A white cane or a hearing aid, a guide dog or an emotional support animal often serve as indicators of disability. Autistic experience becomes strikingly apparent when a person is facing sensory overwhelm, but otherwise, it may be recognisable only to friends or to other Autistic kin.

In disability circles, folks often distinguish between visible and invisible disabilities. People with invisible disabilities often face dismissive attitudes, while those of us with visible disabilities often contend with the consequences of being immediately marked as disabled by strangers. It’s the first thing (sighted) people know about me, my most distinguishing characteristic.

Now, let’s be clear: just because most passersby can see my disability, it doesn’t mean they make accurate assumptions about it. In fact, my life is full of encounters with folks who were outraged that my disability didn’t match their expectations. Like a significant number of wheelchair users, I have some ability to move my legs, and I can stand for a moment or two if I’m willing to pay in pain. But I rarely do. It’s not just the physical cost that holds me back. Standing up from a wheelchair in a public place is a harrowing experience. People are aghast and often angry. I’ve been accused of “faking it”. I’ve had folks threaten to take my wheels away. I’ve heard them make jokes about miracles. Complete strangers get agitated if I move my legs. They assume that wheelchair users are paralyzed, and get outraged if I don’t fit their preconceptions.

And nondisabled people are regularly in positions of power and authority over disabled people. Want the keys to the locked service lift? You’ve got to first convince the gatekeeper who’s watching your every move, probing whether or not you deserve to use it. About to use a disabled parking space? Be prepared to face a gauntlet of vigilante enforcement officers judging your fitness. People with invisible disabilities face this kind of scrutiny full on. When disability isn’t immediately obvious, people tend to assume our bodies and minds will mirror normative expectations.

Many countries now provide certain civil rights protections for disabled people. Employers, educators, and agencies must provide reasonable accommodations to disabled people who need alternative arrangements to do our jobs, earn our degrees, and move through our days. But the increasing availability of disability accommodations has also intensified public anxiety about disability fraud – about the way people might masquerade as disabled in order to secure disability benefits or “special” advantages. Politicians have often successfully played on public fears of the so-called “disability con” in order to cut public benefits and impose austerity measures that have devastating impacts on real people’s lives. For people with invisible disabilities, this attitude of hostile suspicion makes it harder to disclose disability, and ask for accommodations. Disabled folks face gatekeepers who decide if we qualify for disability benefits or insurance coverage, for school programs, accommodations, or support services. And the answer to that question – are you disabled enough? – has the power to shape whether we get by or whether we get left behind.

Meditation: ‘For a House We All Can Live In’ by Erina Kim-Eubanks

We’re moving into a time of meditation now. I’m going to share a prayer-poem by Erina Kim-Eubanks, it was written for a Disability Pride event, and it’s titled ‘For a House We Can All Live In’. It’s a real expression of something we might aspire to. The prayer will take us into 3 minutes of silence which will end with the sound of a bell. Then we’ll hear some music from Benjie & Andrew to continue the meditative mood. So let’s each do what we need to do to get comfortable – adjust your position if you need to – put your feet flat on the floor to ground yourself – close your eyes. As we always say, the words are an offering, feel free to use this time to meditate in your own way.

God of creativity –
of diversity, multiplicity, and accessibility,
You say in your house are many rooms.
You build a space where all can dwell
and live exactly as who we are-
without shame.

So forgive us for the ways that your Church
has shut out and shut in –
for making barriers to your presence,
forging walls to togetherness,
creating hierarchies of bodies and minds,
and building environments that are disabling.

Help us co-create with you
a house that welcomes the fullness of our selves.
Inspire creativity for universal design
marked not just by widened doors and ramped walkways,
but also widened language and open processes.

Give us fortitude to build spaces
that are physically accessible and psychologically safe –
welcoming of neurodiversity,
acknowledging the wholeness of who we are,
our complete need for each other,
and every gift we bring.

May your way of Shalom –
in which every kind of mind, body, and spirit
are honoured as valuable and good –
be made manifest in our world,
so that all your children have room to flourish.

Period of Silence and Stillness (~3 minutes) – end with a bell

Interlude: Chanson de Solveig – Edvard Grieg (played by Benjie del Rosario & Andrew Robinson)

In-Person: Reflections on Changing Perceptions of Disability with contributions from Rev. Dr. Jane Blackall, Karen Hill-Jones, and Michaela von Britzke

I’ve called this section ‘reflections on changing perceptions of disability’. In a minute we’ll get to hear some first-person perspectives – the lived experience of two members of our congregation – so I just want to offer a few brief introductory remarks before I hand over to them.

In preparing this service I had cause to reflect on how ignorant I’d been about the lives of disabled people when I was younger. When I was a child I guess I just thought of disabled people as ‘other’ – completely different – I suppose I thought I was ‘normal’ so it was nothing to do with me. I would have had a very limited view of what it was to be disabled – as far as I was concerned it meant being a wheelchair user, being profoundly deaf, or blind, maybe also Down’s Syndrome and cerebral palsy. My life was sheltered and I don’t remember encountering anyone with a disability at all in my youth. Disabled people were just the passive subjects of charity collections, in my mind, when I was a kid.

However, at some point, for reasons that escape me, I got into watching BBC2’s disability magazine show, ‘One in Four’, hosted by spiky-haired punkish presenter Mik Scarlet, which presented a more radical perspective – stories on disability justice activists chaining themselves to inaccessible buses – it was quite a wake-up call for me to see disabled people presented as agents of their own destiny.

But I think the thing that really blew my mind was something that the comedian Richard Herring wrote about disability over a decade ago – he’s done a load of fundraising for Scope, the disability charity, for decades now, which I think is how he came to be writing about such matters – I managed to find the blog post from 2011 where he wrote this (and I’ve never forgotten it). Herring wrote:

‘One of the things that astounds me about the general population’s attitude towards disability (whether it’s fear, disdain or just the attempt to pretend there’s no such thing) is that ultimately it is likely to be the fate of us all (except those who die suddenly at a young age). A few years ago I was discussing with a wheelchair-user how I should refer to people who weren’t disabled – “non-disabled” seems like a double negative, “abled” does not feel like a fair description of most people (I don’t feel particularly able). She replied that the term she used was “the not yet disabled”, which is funny, but also incredibly revealing. It was a bit of a “mote falling from the eyes” moment for me I remember. If we don’t die suddenly we are all probably going to gradually become more and more disabled, so you’d think that self-interest would make us all anxious to fight for equality for those with disabilities or at least improve disabled access and increase the numbers of disabled toilets. But just because we are unable or unwilling to envision our own gradual demise we pretend it’s someone else’s problem. Just pretend you’re going to be young and mobile forever and that there’s no danger of you being in an accident or getting a disease… Does something actually have to happen to us before we can start thinking of the world from another’s perspective? I guess it does.’

Words from Richard Herring – which absolutely shook me out of my previous naïve view of disability – it opened me up to seeking out the views of disabled writers and justice activists later on – and more recently it’s got me reflecting on the fuzzy and shifting boundary between not-disabled and disabled (as I’ve come to realise the ways my activities are limited by the quirks of my own body and mind).

There’s lots more to be said on this subject – we’re only scratching the surface today – but I want to hand over to other voices now. I’m going to invite Hannah to come and share a reflection from Karen on her experience of becoming disabled as a result of Covid in the first wave of the pandemic; then we’ll hear from Michaela about her experience of becoming visually disabled over the past few years.

Karen’s Reflection on Becoming Disabled as a Result of Covid-19

I would like to contribute the idea that anyone can become disabled. Until I became disabled myself it simply hadn’t occurred to me that I could lose my status as an able part of the workforce, so suddenly, and through no fault of my own. I had always treasured my health, had done everything a conscientious person might do to maintain it; in my twenties I used to swim a couple of miles a week and cycled a few miles to work each day and back. A year before the pandemic started I had a standard health check offered by the NHS to 40 year old people and was told I had above average fitness for a person my age – probably from pushing kids in a double buggy around Stoke Newington every day! I never thought I would become mostly housebound with no foreseeable route to recover my previous fitness. The government rhetoric at the start of the pandemic led me to believe that, if I caught Covid, it posed no danger to me. The Long Covid Facebook forums are full of people like me who feel cheated that they ‘did everything right’ in their lives and yet still got this outcome.

I remember phoning my GP to find out why I was so unwell, wanting to figure out whatever underlying health condition caused this, and him very gently explaining to me that this was just a myth put out there by the government and that, scientifically, anyone can become disabled at any point in their lives. Shortly after that conversation I heard the writer Jack Thorne speak about how damaging government rhetoric about disabled people had been. The constant insinuation that their lives were fundamentally different and less valuable. How difficult it had been for that ableism to come out into plain sight and be so rarely held to account and challenged.

I can’t help but feel that since so-called ‘Freedom Day’ (when Covid restrictions were largely abandoned by the UK government) things have got worse rather than better. My family and disabled friends are now substantially less free than our more able friends, especially in terms of safe access to public space. In day-to-day conversations people often question my disability to my face or ask searching questions, looking for the underlying health condition that separates them from me, so they can carry on feeling the illusion of personal safety. And yet my occupational therapist told me that since they stopped diagnosing people with Long Covid, ME/CFS diagnoses have risen, in a way that suggests that we as a society are still knowingly disabling people on a daily basis. I find this preventable suffering so tragic. It has been nearly four years now, and there are still newly disabled people coming into the forums, in complete shock at what has happened to their bodies and their lives. I am so tired of hearing their stories. I wonder where the tipping point lies, where we will rise up, and dissent from this.

Michaela’s Reflection on Being Disabled (and Becoming Able to Ask for Help)

I briefly tell you how I collected a new identity tag as ‘visually disabled’ – disabled, a challenge that sooner or later catches up with many of us. Partially blind, I now need more help than ever.

About three years ago I suddenly lost sight in my right eye – but only when my left eye deteriorated, did I lose (relative) independence. When hope for improvement ceased, I had to face fearing a blind future. Determined to do what all human beings are expert at – I adapted and focused on being ‘here-now’ – let go of reading books, and driving a car, above all I practiced asking for help with my electronics, clothes shopping, reading business letters and let go of 3000 books. Sainsbury’s Local has what I need in rarely changing places…

I’m learning to ask for help – and find the kindest world imaginable – as if people were just waiting to do interdependence in action.

I still have great joy in being able to use my computer, see clients and above all friends… But – as you’ll hear, I had to become a humble apprentice in the arts of dependency.

When Jane asked me to say something about my experience of becoming visually disabled, I knew that – for my own benefit – I had to keep chipping away at the cultural belief that needing help is the shameful step-sister, when we talk of giving and receiving. I keep trying to disable the belief that autonomy and giving are blessed, while depending on help is a condition of lack.

My major task, in my new visual dependency, is to disable that hierarchy and shout from the roof tops that we all need to learn the art of receiving. Giving is easy in comparison.

When dependency caught up with me, I had to learn all the lessons of the past again: I thought I knew a thing or two about giving and receiving from my working practice as a professional helper in Psychiatry. My clients taught me how difficult the transition from autonomous ‘giver of help’ to being in need of help can be for many of us. We are trained in believing that giving is holier than receiving, autonomy better than dependency. A giver exercises the power of generosity and gets brownie points for it. Receiving help in our society puts us on a lower rung of our social hierarchy of values – benefit receivers are the not-so-secret targets of disdain. We shrink from need and dependency in ourselves even more than need in others, who offer us the chance to keep playing the richer card.

Consciously I know for sure that autonomy and independence are divisive illusions – but feeling really in need of help triggered all my childhood fears of being a burden to others. What saved me was knowing how glad I am when people ask me for something.

I have long been aware of the connecting, life affirming power of people who simply ask. It’s marvellous, really, and all shades of shame dissolve. This is an egalitarian transaction where everybody wins – no pride, no shame – just trusting the reciprocity and inter-connection that is life itself. Giving and receiving aligns us with our deep need to belong in mutual thriving – our common curriculum… No one is an island. We are connected by need and abundance – ready to join the merry dance of connection – felt interdependence that disables illusions of separateness. Joining on the level – we can face this complicated business of living and make the arrival of disability an opportunity to learn something new.

I know how ashamed I was of my dependency, and why I never stopped thanking my clients, for generously sharing their need and accepting what I was burning to give. Together we began to learn that there is no hierarchy in giving and receiving – just life and relatedness.

You might think I was well prepared with my egalitarian outlook on giving and receiving to face what happened. Truth is, that when my one eye demanded much more help from others, the shoe was on the other foot – roles were reversed – I was the one in need and had to face my deep aversion to being a burden to others… Occasionally now I have a brief glimpse of what I know to be true – too slightly yet – that on a spiritual level there is indeed no difference between giving and receiving – while we accompany each other on this short journey we share.

Hymn 36 (purple): ‘For Everyone Born, a Place at the Table’

Thanks to Michaela, Patricia, Karen, and Hannah. Time for our last hymn, number 36 in your purple books, ‘For Everyone Born, a Place at the Table’. Please sing up as best you can for our closing hymn.

For everyone born, a place at the table,
for everyone born, clean water and bread,
a shelter, a space, a safe place for growing,
for everyone born, a star overhead.