Author!!

 Blimey - I'm a published author again!

I co-wrote a Grove booklet with Anna de Lange, published in 2018, called 'Worship and Disability: a Kingdom for All'

Now I've written on my own - and it's published!  Grove booklet 'Being Disabled, Being Human: Challenging Society's Perception of Disability and Personhood'

You can buy them directly from Grove: paperback and digital available

Click on this link

https://grovebooks.co.uk/collections/all/katie-tupling  

If you do get hold of a copy, please leave me a review here, or contact Grove directly.

Covid.....

Facebook memories has reminded me it's 2 years since the Pandemic began to impact our life here at Tup-towers:

2m3mp0m M8aurch o32m02e0  · 

Shared with Public

So, Chris has just received The Text from NHS England.

He's officially an extremely vulnerable person.

He should not leave the house & garden for 12 weeks, and shield himself from us inside the house (no shared bathroom, meals etc...)

We've decided to completely isolate as a whole family instead, none of us leaving the house.

Any deliveries have to be left on the bench in the courtyard where we wipe them down with antibac - or leave them there for 3 days so any virus can die off.

Neighbours are rallying round offering help so we'll figure out how that works...

We've registered with the Council to request help...

We're ok

(maybe a bit wobbly)

 

We shielded - but for waaaay longer than 12 weeks...

Over the last 2 years we have Shielded (where there was Government legislation and support) and self-isolated (when Gov support ended...) as a family.  And when Mr T (who we were trying to protect) had to return to the onsite classroom to teach, and Wee Tup had to return to onsite school, we kept every other part of our lives isolated where possible.  

Family visits were outside only.  Friend contact was minimal. Zoom was a lifesaver (socially and work wise).  The world was both huge (social media connections) and tiny (physically, only our house - which is quite small).

We lost my father-in-law to Covid (in Feb 2021) in circumstances not of his making, as he had been super-cautious since the beginning. Other people's carelessness have a lot to answer for...

Mr T and I are both fully vaccinated (him 3 with a booster on the way, me 2 plus booster)

Wee Tup is eligible for 'under 11 and living with a CEV parent' vaccine, but it's not being rolled out in our area yet... and no-one knows when it will...

The Government says it's done with enforcing mitigations - everyone knows how to be careful now, so we can each do the right thing

Schools stopped requiring masks in the classroom.  

Mr T caught Covid at a training event (only him wearing a mask in a room full of people).  

Wee Tup caught Covid in his classroom (only him wearing a mask in many rooms full of people). 

I caught Covid off Wee Tup as I was looking after him at home.

2 years of being careful, and it still caught up with us... because the 'herd immunity' mentality is no longer "in it together, we'll care for others not just ourselves" but now "I'll probably be ok, you'll probably be ok, and if you're not then just stay indoors... let us get on with our lives"

Good grief - how long since I last posted??!!

 

Such a lot has happened in my life since my last blog post back in February 2019

New beginnings:

We moved from the North to the South, so that I could take up a new position: as a part time Disability Advisor and part time Chaplain amongst Deaf people, both in the same Diocese.

I genuinely thought I had arrived at my final destination and that this dual role was what I'd been looking for.

Endings:

However, after a year in post I took the difficult decision (with the HR department) to relinquish the role of Deaf Chaplain - that post came to an end for me on 31st August 2020. I remain in the role of part time disability advisor.

Pandemic:

it's never a good time to end a role but it's especially difficult when a pandemic arrives during that process.

The pandemic caught us all by surprise and I think many of us genuinely thought it would have burnt out within four to six months…

Our household willingly shielded, altogether – Mr T being a kidney transplant recipient is immune suppressed and therefore although he is very healthy he is extremely vulnerable to viruses.

We embraced (the first) lockdown because as a country we were “in it together”.

Church buildings closed and moved worship into the online space - discovering perhaps to its surprise that Christians were already gathered there being church together and had been for some time.

The second lockdown was more difficult - I think because it signalled the fact that the pandemic would not go away anytime soon. There was no end date in sight. It became apparent that no one could place a date in a calendar when we could return to ‘freedom’ in all of its senses.

The third lockdown was almost impossible, mentally. Schools were under enormous pressure to make home schooling provision as rigorous as being on site in a school building. There seemed to be little consistency from parliament around restrictions and mitigations.

2020 had been a time of clarity.

2021 seemed to be a time of complete uncertainty.

2022 appears to be ‘every man for himself’,

‘you do you and I'll do me’

- which is not how a virus works and certainly not how a virus is brought to an end.

60% of COVID deaths involve disabled people.

Anybody who was once categorised by the government as Clinically Extremely Vulnerable is now being told to “stop being afraid”, “come out from behind your sofa”, and “get on with it”.

CEV and disabled people are now being blamed for restrictions.

“why don't you just stay indoors and let the rest of us get on with our lives”…

So much for the government rhetoric of “being in it together”.

So much for the Christian rhetoric of being “the Body of Christ”.

Chronic stuff - a few ramblings

"You must be in a lot of pain....?"

Each person asking me this question usually includes the 'head-tilt of compassion' - you know what I mean.  
Head just slightly tilted to one side, look of concern on their face.

To be honest, I just want to help them get their head straight again, as it doesn't look comfortable, and I'm concerned they will get neck ache if they keep the pose for too long...

"Must I...?" I usually reply.

(That confuses most people!)


Cerebral Palsy pain

*Analogy alert*

Think of an orchestra.  

Only the double bases, the trombones, and the bassoons can be heard.  They are playing the lowest chord their pitch will allow.  

And someone's not quite in tune.

That's how my muscles and joints feel most of the time.  

It's low level. It's background.  It's slightly annoying. 

The volume can be turned down a little with painkillers, sometimes.  

Arthritis pain

Same orchestra.  

This time, 2 oboe players have fallen out with each other, and the whole orchestra.  

Every now and again they suddenly, and without warning, play a single clashing note, very loudly.  

It cuts through everything else like a knife.

That's my left hip.  And it laughs in the face of painkillers.

It only happens sometimes...


So, yes.  I guess I am.

I'm back!!!!

Forgive me - it has been 15 months since my last confession...

Such a lot has happened in that time, and even in 2017 itself.  

Let me take you on a journey to fill you in on events since we last met, and pick up a few key words along the way:

Turmoil...

Mr Tup had both of his kidneys removed in January 2017 - genetic polycystic kidneys, which were doomed anyway, became infected... They went at the end of January - and along came dialysis.  3 times each week, for 4 hours each session.  Work life went from full time to part time, clothes now hung off him (he'd lost the equivalent of 2 bowling balls when the kidneys came out), and a restricted diet made eating out too big a challenge.  But, he was alive.  

Grace...

On 5th December 2017 we got 'The Phonecall' - a kidney had become available, and Mr Tup was the best match for it.  They met at the hospital - both had travelled well.  The kidney is still going strong, 15 months later - and is a living reminder of Grace.  Somewhere, a family stood by a bedside in a hospital, took a deep breath, and said 'Yes'.  

Wrestling...

No, not the WWF kind.

A deep dissatisfaction with Vicar-ing, and the direction it was going in... Throughout the first 9 months of 2018, I wrestled with my conflicting priorities - one which brought me joy, and one which didn't:

Vicar of 2 parishes.  

Doing more and more talks on disability, access and inclusion (and turning down a few along the way)

And of course, the one which brought me joy didn't bring me a salary!  And I couldn't see how there would ever exist the role which would bring me joy and pay me...

So, stay where I was in what I was doing and at least be stable (house and income)?

Or, stop.  

Trust...

I stopped.  I resigned. Letter sent 7th October 2018.  And went public 14th October 2018.  3 months notice, and at the end of it there would be no house to live in and no income from me.  It was a relief!  Mr T and I had a tangible sense of God being in this, and God knowing what would happen next even though we had no idea.

Surprise!

5 days after going public with my resignation, and 5 days of saying to people, "honestly, I don't have another job to go to, I really am just stopping", an advert appeared in the Church Press....

And that's a whole other story, in a whole new blog post!!

Fonts

No, not this kind of Font - this is the one used in churches for Baptisms...





I mean the Font we use for Print

All of the Accessibility advice - from people with actual accessibility needs - tell us that we should always use a Sans Serif font.

No italics, no words in block capitals, no underlining.

And have clear spaces around each block of type.

And shorter sentences with fewer sub-clauses.

Like this.


Here is a really good document which gives advice :  AbilityNet


And this one too:  RNIB advice


But...

I often hear sighted people complain 

"but those Fonts are so plain"

"I want my poster to look interesting, not boring"

Which means we end up with busy posters that visually impaired people can't read.

Like this one (where I have blanked out the identity of the church):

Well done.

Your posters are not meant to make you happy.

They are meant to give all of the information to all of the people! 

Not just the people with eye-sight as good as yours...

Disability and Senior Church Leadership...

Memories Moment...

As I was searching for something else on my laptop, I came across this letter written to The Times over I year ago...

Disability and Senior Leadership

In July 2016 the General Synod had on its agenda a report (GS 2026) entitled 'Nurturing and Discerning Senior Leaders' from the Development and Appointments Group.   It is part of the wider programme of 'Renewal and Reform' - an "ambitious programme of work" to address mission and growth, and to reverse the decline of the Church of England.

The Report (GS 2026) specifically relates to Senior Leaders - ie those already ordained in the Church of England. Early in the Report it talks about representation of diversity in terms of age, gender, ethnicity and church tradition.  These areas are discussed and acknowledged throughout the Report.  

Disability is awarded a generous 2 sentences at Point 39 "The issue of disability has featured very little in the Church's exploration of diversity within senior leadership.  This will be an additional focus for 2017-2019 and a further working group will be set up to lead this work." 

It appears that the stated desire for diversity does not extend to Disability (as noted by Revd Zoe Hemming in her speech to General Synod), and there is no mention of the Deaf community (the Report perhaps making the faux pas that the word Disability includes Deaf people...)  Revd Tim Goode in his speech to General Synod noted that the language of the Church of England in its reports is often unhelpful - "the issue of disability" - pointing out that disabled people don't want to be thought of as "issues" (and it is worth noting that the word issue doesn't come up when discussing age, ethnicity or gender).  

It would appear that Deaf/disabled people are not expected to become senior leaders even though, as Revd Bill Braviner noted in his speech to General Synod, disabled people are made in the image of God like everyone else - they are not ‘mistakes' on God’s part. Everyone sits on a spectrum for whatever ability/disability we care to mention, and God calls us all to discipleship and ministry. Vocation, including to senior leadership, arises across those spectra. 

The report does not address this, and the omission is only acknowledged in two sentences (almost as though someone mentioned it in passing as it went to the printers...) and then as a future 2 year project.

The Report does not address the question of pre-ordination vocation and discernment, namely the person 'in the pew' having a sense from God that they should be ordained, and beginning the process of discernment.  To be fair, the Report was never given that 'start of process' remit.  Equally, it does assume that minorities and diversity is already represented within the ordained body of the Church in order for the programme to identify and resource such people into senior leadership roles. 

Which begs the question - where is such a report which deals with calling, discernment and vocation to ordained ministry, and does it include reaching those who are Deaf and disabled?  We have had events and roadshows dealing with Young Vocations, Womens Vocations and BAME Vocations.  Where is the roadshow for Deaf & Disabled Vocations?  How many Deaf & disabled people are currently ordained in the Church of England? How did they find the discernment process? 

One priest I know, who has a disability, described the discernment process as "trying to slip under the radar of ablebodied-ism and become as abled as I could to 'hide' my disability...it seemed to work".  

Another said: "people in my parish were encouraging and it was me who pushed against it, very hard indeed. DDOs were sceptical, even hostile at the outset... The CofE does not actively encourage vocations amongst disabled people in the same way as it does for women, young vocations or BAME candidacy as evidenced by the fact that in [my] Diocese, at least, stats for disability are not separated out."

Perhaps this is a grass roots call for all the Deaf and disabled ordained ministers to create a roadshow of their own, and encourage vocations by coming out of the shadows.  

The Church of England has a paid National Advisor for Disability, and various Committees, but as we have seen the structures and reports are making no impact in this area (indeed, seem to have no guidance or basic briefings to include it in their remit from the start). 

We at ‘Disability and Jesus’ are up for that challenge - who is with us?

Revd Katie Tupling

Revd Bill Braviner

Mr David Lucas, 

and guide dog Jarvis

Co-Founders of ‘Disability and Jesus’

www.disabilityandjesus.org.uk 

Doesn't time fly...

I confess...

It has been over two years since my last post....

(Seriously???)

Yes.

And you know how I said we'd never move again?

Well, we did!

300 yards away

Into a house which was infinitely more 'disabled accessible' than the one we'd started off in...

Hurrah!

A space to flourish...

And we got a dog!

And I said I was Vicar of just the one church...?

Well now it's 2!

Now it's Strictly time, so I'm off to watch it with the Wee Tup, whilst Tall Tup makes dinner...

Disabled - but not uniquely so...

It was a bit weird, if I'm honest...

I was recently part of a day conference hosted by the Inclusive Church Network, looking at Disability and hearing different people's experiences. I was there with Dave, Jarvis his guide dog, and Bill - we are the core team of a group called Disability & Jesus.

And it was great.

And it was weird.

I was suddenly surrounded by people with disabilities.

I found myself at one point sat on a chair alongside 3 people in wheelchairs, looking across at another 4 wheelchairs, 2 guide dogs, and a variety of people with walking aids...

You rarely find that outside A&E departments.

I'm usually the only disabled in the village - surrounded by ableds.

At the conference I was not unique.

Neither was I alone.

As I say - great, but weird.

http://disabilityandjesus.org.uk/ 

https://twitter.com/DisabilityJ?ref_src=twsrc%5Etfw

https://www.facebook.com/media/set/?set=a.953275201401456.1073741876.166299846765666&type=3 

tug-o-war....

It's Monday morning,  the first proper rest day post Christmas and the first of the 6 I'll take as holiday before putting on my dog collar and resuming 'normal' service.  I should be asleep,  having turned my alarm off, booted the snoring husband to the spare room for one night to guarantee unbroken sleep. Instead, it's 07:33 and I'm wide awake,  processing....

 

Vicars - well, ok,  perhaps just this one - are caught up between the two ends of a tug-o-war rope.  

 

At one end, the annual cycle of events and services, patterns of worship, seasonal 'must do it like this' moments - and I spent a day putting them in my diary through 2015, along with observations as to how they'd gone this year,  reminders ahead of time about publicity and planning,  and notes as to whether they needed tweaking or completely re-thinking. Also at that end are the nuts and bolts of management: the fabric of a Victorian building which shows itself again and again to be a huge frustration when it comes to welcoming and hosting a total of almost 900 people over the 5 services on Christmas Eve and Christmas Day: the growing and pressing need for staff appraisals, especially in the light of one who refuses to be a team player and instead presents the world with the sour and disapproving face of the Church: the Budget that doesn't give anyone a sense of joy: the expectations (from Diocese, local clergy, people in the pews,  teenagers in the youth group, Church Council, Leadership Team...) that I will be the catalyst for church growth (just like in the golden days when Revd *pick your favourite vicar from past years* was here) ........ The list goes on......

 

And at the other end of the rope? 

 

Well....

 

.... The quiet, but persistent question, "what's the Jesus-point of all this?"  

 

And I have 2 problems.

 

You see,  the 1st rope end could be any organisation trying to run itself efficiently, develop its staff, make its buildings fit for purpose,  balance its budget when money (and generosity) is short, and present its purpose to the public in an engaging and attractive manner. An entire Church Council can go by with no mention of God...

 

And whereas Jesus should be at the other end of the rope taking the strain and shouting encouragement,  I look and see that he's tied it to a tree and has disappeared somewhere else.... And I really want to know where he's gone and what he's doing. 

Walk with me....

Walk with me....

Not holding back from the pace you'd rather be walking at....

Not walking ahead, then waiting for me to catch up, then walking ahead.....

Not in a gang ahead of me as though I don't count....

Actually with me, shortening your pace to match mine, your speed to match mine,
almost as though you're needing to keep up with me, rather than hold back for me...

Please, walk with me.

Just once.

Walk with me.

It's quiet.... A little too quiet...

Tup-towers is quiet.

Too quiet.

Since the wee man started school for the 1st time, and Mr T has gone back into full time paid work, the house is quiet most of the day.....

Nice to have my space back? To have my timing back? To be distraction free?

Actually, no.

Words that harm....

My 'baby' has now started "big boy school" - he looks all grown up in his uniform,  and despite my fears that education will ruin my beautiful,  kind,  considerate, loving son, he seems to be thriving.

However, a word has entered our vocabulary and I really don't like it.  This word puts a strain on our relationship, makes me feel that I've failed in some way,  and generally upsets me.... 

The word?

Hurry....

Since starting school we are in a hurry: 

not getting dressed quickly enough - "hurry up" 

not putting his shoes on quickly enough - "hurry up" 

not getting in the car quickly enough - "hurry up"

not walking down the path quickly enough - "hurry up" 

And before you tell me to set the alarm earlier, yes the alarm is early enough.  The pressure still remains, that we are now working to a strict timetable and cannot be late.  We are clock watching like never before.  We have no time to "stand and stare", but must be there.  And I don't like it.

Bishops - Men & Women....

There's an old saying:  "You can put lipstick on a pig, but it's still a pig...." 

Yesterday (14th July 2014) the 'governing body' of the Church of England - the General Synod - passed a motion to enable men and women to serve and minister across the whole of the CofE: to be ordained as Deacons, Priests and now Bishops.  The Legislation has been passed, and now goes before Parliament and then the Queen for their assent.  It then becomes Law, and those who are part of the selection of Bishops can now consider both men and women according to calling and gifting, and not be restricted according to gender.

Good news for those of us who - after a thorough engagement with scripture - believe this to be the right thing.

So why the pig in lipstick?

There are those who believe that to be a woman priest is impossible,  the very phrase is an oxymoron, that a woman can no more be a priest than a pig in lipstick be a lady.

So, the legislation passed contains an anomaly.  The Law will say that I am a priest and able to be a Bishop.  It will also say that I am a lipstick wearing pig.  Why? Because it contains promises of safeguarding against my porcine ministry.

Not sure I have any more words for the minute...

New beginnings...

So, we have moved!  When God says, "Time to go," then you pack up and move.  In our case, 6.2 miles from where we were.  Over a parish border, into a different Diocese (and a different Province - so now I am accountable to the Archbishop of York - although if were being pedantic I am ultimately accountable to God!)

All of this means a new house which is to become a home, a new community to find our way around and belong to, and a new church (just the one this time) in which to flourish.  Oh, and the way we got to know our immediate neighbours was when we asked them to help us manoeuvre the caravan onto the driveway by hand, and there's not enough swing on the road to use the car (unless I demolish the church wall... which I nearly did with the car... hence knocking on doors... as the school run was about to start...)

Chris levelling the caravan outside the Vicarage - the driveway slopes more than you can tell from the photo

So, 5 weeks into the post (of which nearly 2 were wiped out when I suffered the whole-body effects of pulling the muscles in my 'good' leg during the moving process), how are we doing as a family? Well, there were several cries of "we are never moving again!".  And that seems to accurately sum up how we are.  We belong here - home, community and church.  And here we are - until God says, "time to go..."

Nemeses....


Time for a quick rant - all justified if you don't mind...

Here are some of the things in life which I consider to be my own nemesis:

Gravel.

 

In any form.

I don't care how pretty and convenient and cheap it is.

It moves.  Under all 4 of my feet.  Particularly my crutches.  And it gets stuck in the 'feet' of the crutches and the minute I'm back on a flat surface the sticking out bits of gravel make me slide and skid - and risk ending up on my back with all 4 legs spread about...  And that's just rude.  So please, people, bag up your gravel paths, driveways and other foot-fall byways, and get a proper floor covering.


And whilst we're on the subject of unhelpful and potentially dangerous flooring -

Marble.

I mean, why? 

Firstly, it looks slippery.  And for those of us with a dubious sense of balance and co-ordination, the appearance of a slippery surface is enough in itself to make us seek out a big detour. 

Second, it gets slippery to easily, and there's nothing to absorb any liquid spilt/walked onto it.  So now it looks and is slippery.  And I've got 4 legs (count them, 4) to potentially skid on the floor.  So do me a favour, and get a carpet.

Buffet.

Everywhere I go, there's a Buffet.

Let's do the maths - plate, one hand; glass, one hand.  Crutches x 2, 2 hands.  So now I'm up to 4 hands.  No, no, no. 

And it's not humbling to say to some willing and lovely person, "I say, would you mind carrying my food please?". 

No my friends - it's humiliating.  I can't carry my own food, or drink. 

I can't stand around with said food and drink chatting lightly about this and that.  I apparently need to trail around after you like a small child with you deciding what and how much I should eat.  Having stood awkwardly in a queue for the privilege.

Thanks, but no thanks.  I'll ring for a pizza ta.


And finally - for the minute.....!

 

No Handrails...

Have you ever used crutches? 

They're not designed to weight-bear.  Legs are. 

So now I've got a leg that works, and leg that should but doesn't, and 2 long poles which are ok on the flat (except for on Marble or Gravel...).  And when I meet steps and stairs that have no handrails, I have to control 3 variable 'limbs' but up a sequence of trip hazards and against gravity, with no additional support? 

Thanks.

The most insulting scenario is a staircase with a handrail that stops half way.... WHY?  That's just sticking 2 fingers up and saying, "thus far and no further - get legs..."

I was having a think about Mothering Sunday - the highs, lows and pitfalls of being both Mother and Priest on this most marvellous day, holding my own thoughts, a weight of Church history and theology, and a pastoral awareness of the mix of people in (and resolutely not in) the congregation for the Mothering Sunday service.

 To be honest - it's a minefield! And I think a fellow priest and blogger writes about it far more eloquently than I.

parttimepriest.blogspot and click on the heart saying 'special mum'


Happy and joyous Mothering Sunday - wherever, and however, you are.

Out of the mouths of babes...

Me: I need to do some work sweetie, whilst daddy clears snow from the front door, up the drive, up the steps and around to the front door of the church, so mummy can get to the 8am service tomorrow morning...
Wee man: Mummy, we watch telebision peese
Me: Why don't you bring something into my study to play with whilst I work?

[Wee man disappears into living room - returns with pot of crayons, disappears again, returns with his little stool, disappears again, returns with his drink, sets up said items at a small table in my study...

Me: what are you doing baby?
Wee man: I need paper, I working at my desk, I very busy

There's so much to think is very sweet - there's so much wrong with this too...

2 years - a whole 2 years since I last posted anything!
Which means my little tiny baby boy is now 2 and a half...
He's not a baby any more.
One minute he fitted in the crook of my arm, tiny and dependant;
now he's doing the hokey-cokey with a toy kangaroo and shouting gleefully 'look at me mummy - bottom in, bottom out...."'

So now I've remembered my log-in details, I shall update you, dear reader, on the last 2 years :-)

And in case you think we now live in Hobbiton - he is looking through the bedroom porthole in our narrowboat!

the life of a new mummy...

I can't remember my life clearly before Sam arrived - I sort of remember parts of it, as I remember events from my life when other people reminisce or I look at photographs.

But the reality is, there is only today. I look at photos of when Sam was born, nearly 20 weeks ago, and it feels like a lifetime ago. I don't remember him being that tiny, I struggle to recall the reality of the early days in hospital, and have hazy memories of the difficult first weeks and the tough decisions to first switch to bottle feeding and then onto formula.

There is only today. He is asleep in his pram at the end of the sofa, and soon he'll wake up with a full nappy and an empty tummy. We'll listen to the radio as I feed him baby porridge, scrape most of it off his face as he gives me that huge, accepting, toothless grin, and then we'll smile and laugh and play until he's tired and needs to sleep again. I'll hold him for a moment, looking for the cues that he's ready for a nap - him burying his head into my neck, making small cries, and trying to pull my face off - and I'll kiss him softly on his cheek, whisper that I love him very much, and lay him down gently. He'll grumble for a moment, suck his thumb, and fall asleep with his thumb just resting at the edge of his mouth.

My beautiful son, my treasure, my beloved.