Welcoming Disability: Week 4: 2015

This blog entry was originally posted by Fr Keith Hebden when he was our Associate Priest

In our fourth week each group is challenged to invite someone as a guest storyteller. In one group a Methodist minister who experiences a chronic illness came to speak. In another we heard from a fourteen year old member of the church with autism and ADHD. In the third group a member brought a very heartbreaking poem. You can read it in full on this link but below is a quote from the poem:

I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.

I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.

I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer noise is too overwhelming for you.

[…]

I sit quietly while you scream at me, trying to control the panic you feel because I gently touched your head when brushing your hair.

I sit quietly while the teacher tells me she knows about autism and that you are not autistic and asks if I would benefit from some parenting classes.

I sit quietly while the GP, the occupational therapist and the paediatrician agree how bad it is but say that there are no resources to support us further.

[…]

I lay quietly beside you when you tell me that you are the wrong sort of special and the wrong sort of different and you want to die.

As you can imagine: we struggled to respond to that with anything but our own quietness.

Then we read this.

My God, my God,
why have you forsaken me?
Why are you so far away,
so far from saving me,
so far from the words of my groaning?
I cry all day, my God, but you never answer;
I call all night long, and sleep deserts me.

But you, Holy One –
you sit enthroned on the praises of Israel.
Our ancestors put hteir trust in you;
they trusted and you rescued them;
they cried to you and were saved;
they trusted you and were never disappointed.

Yet here I am, more worm than human,
the scorn of humanity, an object of ridicule:
all who see me mock me;
they shake their heads and sneer,
“You trusted God? Ha! Let God save you now!
If God is your friend, let God rescue you!”
Yet you drew me out of the womb;
you nestled me in my mother’s bosom;
you cradled me in your lap from my birth;
from my mother’s womb you have been my God.
Don’t’ stand aside now that trouble is near –
I have no one to help me! (Psalm 22: 1-18, Inclusive Version)

It’s not been an easy four weeks but it’s been a huge privilege to hear one another’s stories and to share our fears, failures, and hopes. The stories from people’s lives have been like keys that unlocked the bible for us and the stories from the bible have helped us more deeply hear – and respond to – the stories.

We’re left wondering what next and will certainly want to answer that with something significant in the life of the congregation. We want to ask: What is God doing and how can we join in?

Welcoming Disability: Week 3: 2015

This blog entry was originally posted by Fr Keith Hebden when he was our Associate Priest

In our third week in our four week course we heard the story of Ben Allison, a trainee vicar who is autistic and dyspraxic. You can read his story in full if you buy the Inclusive Church book “Disability”. Ben happens to be a friend of a couple who worship at St Mark’s – Ruth and Ellie – and we’d invited him to speak a year earlier. He’d been both entertaining and challenging that day as he provoked us to think with his suggestion that Jesus may have been autistic.

As a person with autism he speaks graphically of how he registers so many more of the sounds and sights of life than most other people, and how distracting that can be, in church.

I have heard the inaudible whine that the spotlight on the fifth pillar is making. I have heard the mutter of some crossed radio-frequency through the microphones. I have heard rustling papers, rustling robes, and rustling people. I can hear the rhythmic tapping of my fingers against the back of my hand. I know that the rest of you do not hear these things, but just because you cannot hear it does not mean it isn’t there. 

But he also writes of his overwhelming sense of how God sees him and loves him as he is.

God looks on me with the eyes of a father, the same way as he looked at Jesus.

There are members of our church and of our Boys Brigade who are diagnosed as autistic so this week’s story led some of our groups to quite a self-reflective space. But also to sharing some uncomfortable stories of people with autism that leaves them with far less opportunity than Ben has, in life. We wondered where God might be, in all this?

As usual we put a passage from the Bible alongside the story/stories from our lives (1 Kings 19).

God said [to Elijah], “Go out and stand on the mountain in the presence of YHWH, for YHWH is about to pass by.”

Then a great and powerful wind tore the mountain apart and shattered the rocks by YHWH’s power – but YHWH was not in the whirlwind. After the wind there was an earthquake – but YHWH was not in the earthquake. After the earthquake came a fire – but YHWH was not in the fire. And after the fire came a gentle whisper.”

When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave. Then a voice said to him, “What are you doing here, Elijah?”

Elijah couldn’t find God in the great big noises and the drama of nature. It was only when those sounds were out of the way that he could here the “gentle whisper” or what some translations call “the still small voice” of God.

We wondered how we might better help people to hear that still small voice in the midst of the bells, smells, and flickering lights of church.

We decided: we had better ask!

Welcoming Disability: Week 2: 2015

This blog entry was originally posted by Fr Keith Hebden when he was our Associate Priest

This week we saw new people joining 2 of our 3 groups. Word has spread! It’s week 2 of a four-week course called “Welcoming Disability” based on the book by Inclusive Church called “Disability”. We met in 3 different groups, locations and times with a total of 22 people involved.

This week, each group began with a question ‘in the round’: “Have you ever been frustrated by your own limitations compared with those of other people?”. The answers showed that we all experience this – unsurprisingly but also gave us a chance to share a bit of ourselves. We also heard how people had limitations imposed on them by others – parents, teachers, or other adults with power – when they were children; not a universal experience but noted.

Our big story this week was that of Revd Rachel Wilson who felt God’s call to ordination was “called because I am disabled, not in spite of it”. Rachel had been very angry with the Church because of Christians trying to heal her of her cerebral palsy and blaming Rachel’s “lack of faith” for it not happening. The miracle was that she ever returned, however haltingly, to get her children christened and eventually to believe that God loves her and wants to make her a channel of God’s peace.

She writes:

It is important to say at this point that I used to have a debilitating stammer and my Cerebral Palsy means that co-ordination, balance and decent posture are never things I’ve got the hang of.  Hardly surprising then that when I first thought that I heard the call to ordination, a feeling which simply wouldn’t go away, I said to God something like “Look God, I don’t want to tell you what to do but I have to point out to you that I can’t walk and can’t speak properly – you can’t be calling me into public ministry”.

In one of the groups a teenager talked about a vision of the serving party (those who carry the candles, cross, gospel and incense into and around church) being more diverse in terms of disability and in other ways too. The idea that Rachel, in a wheelchair and with a stammer, could be a priest opened up this possibility to us. In another group we talked about how difficulty it was to even talk about disability and that we had very little “God talk” to help us do this. Hopefully these small group sessions are step in the right direction for that.

We then went on to look at a story about Moses and the people of God fighting against the Amelkites in Exodus chapter 17:

Moses said to Joshua, “Select some of the able-bodied to go out and fight the Amalekites. Tomorrow I will stand on top of the hill holding the staff of God.”

So Joshua did as Moses ordered and fought the Amalekites while Moses, Aaron, and Hur climbed to the top of the hill. So long as Moses kept his hands raised, Israel held the advantage, but whenever he lowered them, the Amalekites took the advantage. When Moses’ hands grew weary they set up a stone for him to sit on. Aaron and Hur held his hands up on each side, so that they remained upright until dusk. And Joshua prevailed against the Amalekites by the sword.

There were the usual reactions to the idea of God’s violence or that God takes sides in this magical sort of way but beneath that was a look at the relationship between God and Moses in the story and between Moses and Aaron.

Moses was called by God (despite his troubles with speaking) and at this point in the story found himself to tired to raise his hands. I suppose they could have drawn up a rota and taken it in turns. But it was a role that only Moses had been commissioned by God to undertake. But God didn’t just ordain Moses in his fallibility with encouraging words or magic hands. The calling on one person is the responsibility of the whole community. Perhaps God doesn’t call us either because of disability or despite it but rather God calls each of us to a special task knowing that no one is called to act alone: we all must practice interdependence.

In a couple of the groups I felt like it would be good to share this short film produced fairly recently. It features the voiced recordings of my former tutor Professor John Hull. An absolute inspiration. You cannot watch (or listen to) this video without being changed by it.

Keith Hebden is the author of “Seeking Justice: The Radical Compassion of Jesus”. 

Welcoming Disability: Week 1: 2015

This blog entry was originally posted by Fr Keith Hebden when he was our Associate Priest

This week we started a four-week course called “Welcoming Disability” based on the book by Inclusive Church called “Disability”. We met in 3 different groups, locations and times with a total of 22 people involved. Each week we hear a story about a disabled Christian and reflect on what we hear and then we read something from the bible and see if we can connect up the two in a way that leads to real change.

Generally our habit is to go around the group with a question. In the first week it was, “Why does disability matter to you, personally?” Among the stories of experiences of personal frustrations or failings one of the themes that emerged from that question was one of accidental exclusion of a disabled person by an individual or group: The “Does she take sugar?” syndrome.

In our first week we heard about Susan who has epilepsy. She writes:

My biggest problem with epilepsy is other people.  I don’t lose consciousness.  I don’t need medical attention when having a seizure.  My arms jerk and my head jerks and my voice gets louder and sometimes I bark like a seal.  I look weird.

People seem to think I can control what is happening to me.  They often shout in my face or make fun of me.  I’ve been dragged out of a building and thrown onto the street by the security guard to whom I went for help in finding a quiet place to sit.  I didn’t fit the only type of seizure he knew about.

She goes on to tell about how a well-meaning person excluded her from helping out at an event because they decided that her disability meant she couldn’t join in. The person may or may not have been correct but the feeling of powerlessness that Susan felt when that decision was taken off her came across strongly to our groups.

The bible reading we used for this was from Matthew’s Gospel. A gospel being a (sort of) biography of Jesus’ mission. It’s short so here it is in full:

Jesus heals the epileptic (Matthew 17: 14-21)

One of the crowed came up to Jesus, knelt before him and said, “Teacher, have pity on my child, who has seizures and is very ill. The child will often fall into the fire or the water. Even your disciples have failed to effect a cure.”

In reply Jesus said, “What an unbelieving and perverse generation you are! How long must I endure you? Bring the child to me.” Then Jesus rebuked the demon and it came out, and the child was healed from that moment.

The disciples then came to Jesus and asked, “Why couldn’t we expel the demon?”

Jesus answered, “Because you have so little faith. The truth is, if you have even as much faith as the tiny mustard seed, you can be able to say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

The participants were asked how they felt about the story. Many of us felt angry at the idea of a disability being labelled as “demon possession”. But then we looked closer and noticed that Jesus’ challenge wasn’t to the child but rather to the disciples and the crowd: he rebuked them and then he cast out the demon.

We wondered if our ‘able-meant’ had led us to assume that the epileptic was the one who was exorcised. Couldn’t it more obviously be the others, who had failed to include and understand the child, who need exorcising of their fear and misapprehension.

How often was Jesus cure about social reintegration? How often did others exclude only for Jesus by affirmation of faith or by touch or both seek to re-include those who are on the edges?

Each week we challenge each other to some small action or research to help us respond to the stories we’ve heard and talked about.

We were left with other questions: Is there a published disabled reading of this scripture somewhere? How do other cultures interpret epilepsy, perhaps it’s not always negative? Some of us went away to research websites like The Kairos Forum or Open Ears; others to listen to “In Touch” on BBC Radio 4; others to simply be more aware or to meet with someone they knew who had a disability and ask them about their experiences.

Keith Hebden is the author of “Seeking Justice: The Radical Compassion of Jesus”.