Thursday, 12 May 2022

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

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


Wednesday, 23 March 2022

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
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"



Thursday, 10 March 2022

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”.

Tuesday, 12 February 2019

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!!



Wednesday, 15 November 2017


Fonts


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



Image result for fonts church

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...





Wednesday, 8 November 2017

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