Thursday 6 May 2021
Thursday 8 April 2021
There was a discussion about UK poverty and class in the community of pioneers Facebook group. I felt it was important to highlight the issues disabled people face in our society. It's been really well received
I feel that raising these issues with church leaders is a key part of my ministry, speaking truth into situations.
Here's what I wrote
I feel like people may be bored with my regular mention of the lack of inclusiveness of disabled people in church, but it's very much a part of the issue you raise. Not only are disabled people absent from church because they are excluded or omitted; but they are absent from most of society - literally hidden away. They are invisible and forgotten and living in often awful situations.
I don't know, and can't find, the actual number of disabled people who can't leave their homes, or even their bedrooms; but it's many thousands. This includes people with physical disabilities, learning disabilities and mental health disabilities.
What I can tell you is that there are 14 million disabled people in the UK and less than half are in employment. That means they're living on benefits but with the additional costs of being disabled - they are living in poverty!
That's not something I knew or would have believed until I became disabled and faced barriers myself and then got to know other disabled people and hear their stories. It is shocking to hear these stories.
Let me give you some examples.
First my own story is a battle to get support. I was told at the start by a social worker that I had to accept that I would no longer be able to be independent, that the social care system isn't required to ensure I can leave the house every day - once a week is considered acceptable. I lost the ability to use stairs and assumed social care would help. And they will, but this is the process: Being assessed by social care takes 6 months, then another 6 months to identify what I need to be able to leave my bedroom, then a wait of another 6 months to get approval for budget and then a wait for the work - that would have been 2 years in my bedroom if I had to wait for council funding to leave my bedroom. I was lucky, it only took us 3 months to remortgage our house to get the money to get a lift (£30k) so I could get around the house. Then we had to find money to get a complicated ramp to the front door (£1000) and more money (£5000) for the deposit for a wheelchair accessible car. We looked at moving to a bungalow but this would have cost even more. And I'm lucky, we could find the funds to do this. Most people when they face disability either have to face long waits or get charity support or literally beg people with crowd funding requests.
Other issues which mean disabled people are often invisible:
Did you know the NHS wheelchair service is a one year wait in most places? And they don't have funds for powerchair any more. Mine cost me £12000.
Oh and then social care keep telling my husband that he should give up work to meet my care needs - but if he does that we lose the house and it's remortgaged. So then they say my 15 year old should step up more! Young carers are an assumed resource in the UK! Luckily we manage as a family, but you can see how many families just fall apart and end up in poverty, or the disabled people give up and just stay in bed all the time. And if you become disabled, or have a disabled child whilst in poverty, there's no hope!
I am sharing this to raise awareness but also to remind us all that even if we think we live in an area with no poverty (one person has said that in this thread) I guarantee you it's not true! Poverty exists everywhere but might well be very hidden.
I will end this post with the most shocking thing I've heard from friends living with disabilities.
Social care budgets are so stretched now that disabled adults, who need help for every aspect of life, are only entitled to 2 care visits a day, of half an hour each. That's 2 half hour visits a day to help people get up, cleaned and dressed, take medication, eat meals, change the bed, clean around a bit, wash up from the meal, do the washing, get back into bed, possibly have a chat. Try and imagine that. What does this mean in reality? It means you are treated like an object, you are able to have a shower once a week if you prioritise that over cleaning the house. It means you sit in your own mess for hours, and if that makes you feel uncomfortable to read then I'm sorry (not sorry). The system relies on family and friends and charities to step in, but the lockdown has highlighted the horrific reality of how little support is actually provided statutorily.
I could go on with the trauma of applying for PIP, the lack of increase in payment of disability benefits, the lack of NHS funds for health care for disabled people but I think you get enough of a picture.
The church needs to step up and step into this situation.
Tuesday 26 January 2021
I just thought I should put a quick update up since the I've not been able to keep LLM Calling updated with all my poetry and artwork.
The reason: Covid which has become Long Covid.
I am today 12 weeks into my journey with Covid 19 and I still can't sit up for long enough to speak for long or deal with computer work. Sadly this means there's all sorts of creativity which isn't making it here - yet.
However.... I'm using what little energy I have to write poetry and create digital artwork every day. It's a great form of prayer, mindfulness, processing of emotions, political ranting and just generally exploring life and. faith.
I am sharing everything I am creating on social media.
The best place to see what I'm creating is probably Instagram where you can find me @emmuk74
You'll also see me tweeting @emmuk74
Sharing new Little Guy creations on the Facebook page at Little Guy; Journey of Hope.
Plus I share a lot of my creations publically on Facebook.
I hope to be back soon, until then please say hi somewhere on social media.
Sunday 20 December 2020
Never have I needed creativity more than this year. And this last 24 hours with the constant changes about Christmas have seen my emotions all over the place and so I've drawn and drawn and given my mind the space to process through poetry.
Here is the series I've created with a video at the end of this morning's tangles.
Care for those you love
Vulnerable are still at risk
Stay small, short, local
Heavy tier 4 action
Capturing some frustration
Of late notice
We know that
Couldn't they have told us
No change really
But we were hoping
For one day
Just one day
Of nearly normality
And we knew it was unlikely
But our hopes were rising
Closed back upon us
No one can meet us
And I know it's the right thing
I'm glad they're doing something
To save lives
But it hurts
Tonight, it hurts
So many changes
Results in anxiety
Tears and sadness
It's a normal reaction
It's ok to feel it
Don't hide it inside
Feel free to share it
Then pause for a moment
Notice the blessings
From bird song at dawn
To online connections
Focus on hope
On days that will come
When we can gather
And hug everyone
Christmas this year
Is totally different
But light still shines bright
In every moment
Of many shapes and sizes
Nothing like this year
This year we will find
New ways to connect in love
Keeping us all safe
You can watch timelapse videos of the creation of many of these on my YouTube channel
Sunday 13 December 2020
This poem came up as a memory on Facebook and it appears that it never made it to my blog. In fact when I read it I wondered who'd written it, apparently it was me.
I actually feel more hopeful one year on; though Brexit agreements seem appear further away than ever and we'll probably crash out in a few weeks time. But my hopeful thoughts for the end of 2019 are stronger, because I've seen people come together through the pandemic and it gives me hope?
Saturday 5 December 2020
Grayson's Art Club: the exhibition aired on Channel 4 last night and I've been overwhelmed with messages of thanks and about how I've inspired and blessed people.
So now it's my turn to share a rough and ready list of how Grayson and the Art Club team have inspired and blessed me.
Talking to Grayson for the first show. Almost an out of body experience. Being such a fan girl and proud of it.
Grayson's ability to connect so quickly and make me feel relaxed so I could chat to him just as I would a friend
Having Grayson affirm that my creativity is artistic, it's not "just" anything, it's art.
Resting in the idea that I might be an artist because we're all artists when we create to express ourselves
Realising that all drawing and painting and sculpting and making is art, it doesn't have to be a certain standard to achieve that title.
Creating is art.
Dictionary definitions of art
Art: the expression or application of human creative skill and imagination, typically in a visual form such as painting or sculpture, producing works to be appreciated primarily for their beauty or emotional power.
Art: the various branches of creative activity, such as painting, music, literature, and dance
Watching the entire first series and feeling even more inspired to keep creating.
Realising the truth in the lack of access to the arts for disabled people both to appreciate and to participate
Spotting art everywhere and in everything.
Encouraging people to embrace their creativity and express themselves by creating in whatever way works for them
Fully taking on the identity of a creative person, of a poet, a writer, an artist.
The exhibition and lots of conversations and emails with the curators.
Their idea to display the entire sketch book rather than just the sketch.
Fiona, who was on the show, recommended that I should keep the sketch in the book as a record of my creativity and that the whole book should go on display. Thar made me feel like an actual artist at every step, it was so affirming
The process of deciding what would go on the information panel next to my artwork in the exhibition. The curators encouragement to share what felt real for me because that matters
Insight into the world of creating TV programmes with lots of extra bits for editing.
An hour with Grayson, Neil and Adam in the garden!!!
General conversation about creativity and society and faith and accessibility and inclusiveness and politics and life and cats
Being interviewed by Grayson and talking about many different aspects of life in lockdown and creativity and disability and hope and hope and hope.
The joy of meeting the man I have been so inspired by and being inspired even more.
The genuine sadness the team felt that I wouldn't be able to get to Manchester to visit the exhibition. The way they wanted to make it so I could visit it somehow.
Zoom tour of the exhibition, the time that Grayson and Philippa and the team gave me to see it in all its glory.
The way Grayson helped me get up close so that these artworks filled my computer screen so I could see them - better than I will be able to in real life I think.
The joy of laughing together and noticing together and appreciating people's amazing art together.
The overwhelming feeling of seeing my sketch and poem presented in a display cabinet in an art gallery.
The realisation that people will come and look at it and that it might encourage them to express themselves through sketching or writing.
The messages of love and care from the team and Grayson and Philippa when I caught covid and was so ill.
The turning on its head of the idea that all media people are in it for themselves - it's not true of these people.
The messages from the team before this exhibition show went out letting me know that they loved my contribution. Affirming me and reassuring me not to be fearful of what would make the edit.
The amazing show itself which had me in tears both happy and sad.
The tweets and messages during and since the show from friends and strangers. The reminder, whilst I'm feeling so low emotionally and physically as I slowly recover from covid, that just being me and sharing my truth can bless people and give them hope.
Hope for the world as we emerge from the pandemic together
Hope for the arts generally. Grayson's Art Club has connected with so many who might never have thought about going to an art gallery and hopefully that will have made art galleries even more accessible for everyone
Hope for an increase in people being creative for creativities sake
Hope for the goodness of people
Hope for more accessibility
Hope for the future
It has been amazing to be a tiny part of the Art Club; these are just some of the blessings. Thank you Grayson, Philippa, Neil, Adam, Fiona and everyone who has blessed me.
I'll finish with this quote from the programme from me
Sunday 22 November 2020
Hello Dear Christmas
I hope you are well
Then after we'll dwell
In your season of giving
Of joy, peace and love
Through Jesus born baby
Your gift from above
Yet listening to leaders
They seem so confused
They say you'll be cancelled
Unless lockdown they snooze
Why don't they realise
That the gift you will bring
Is greater than presents
Or wide travelling
You're a gift of God's presence
Much needed this year
Light in the darkness
Hope in our fear
This year you'll be different
In a myriad of ways
Bless us dear Jesus
Through all of our days
#sundaypromptchallenge was to "Write an epistolary poem to your favourite festival." This is a letter form poem and at this time of year, it can only be... Christmas. Especially when there is so much talk of "cancelling Christmas". I hope you enjoy my letter to Christmas.
#Jesus #joy #hope #love #peace #lightoftheworld #family #covid19 #shieldthevulnerable #loveyourneighbour
Friday 20 November 2020
What I've learned in 2020 is that I can face my fears.
I can stay home for five months.
I never thought that was possible, I struggled to stay home for one day, let alone five days, five weeks or five months. But when you're told to shield you do it and I did it. There were really hard days and weeks but with help from my GP, counselling, family and friends I did it. I was blessed not to be entirely on my own because my husband and teenager shielded me by staying home as well. However they found their inner hermits and actually loved the experience - in fact they would have continued for much longer and hubby is now working from home full time and daughter is currently isolating from school and very content.
I can cope without hugs
This was by far the worst part of shielding because I'm a hugger, I love to hug my friends. I was really struggling with this but decided to try a weighted blanket after hearing how they were helping people. Well all I can say is - give it a go. When I lie under it I feel calmer, held, supported and my anxiety reduces. I never would have thought it could work but it is just what I need. I have embraced the weighted blanket revolution so much that I now have two, one for bed and one for the sofa.
I have trauma in my past which I can heal from
I won't go into detail, maybe I will in the future, but not now. Lockdown has uncovered trauma I didn't really know about and I have been diagnosed with PTSD and an awaiting specialist therapy. It was terrifying when my counsellor and I identified this trauma issue but I've been incredibly well cared for by Talking Therapies and have been moving through two sets of preparatory counselling whilst I await the PTSD therapy. Two months ago I wasn't sure that I would be able to face the past, I just wanted to lock it into a box in a box; but I have developed new skills for my toolbox and realised that I have been using lots for years which I can be proud of. I am now looking forward to healing and living an even less anxious life in the years to come.
I still like my husband.
This may sound flippant but it's not. Over the last few years I have been worried that we've been drifting apart and although we love each other still I wasn't sure we'd choose each other as friends any more. We just didn't seem to have much in common and life was too busy to try to reconnect.
Well being locked down together for all these months has given us time to hang out as a family and as a couple and it has been a joy to rekindle our friendship and know that we are an amazing unit just as much now as we were twenty years ago. Of course we still argue, I'm a passionate red head after all, but we always make up.
I can go into A&E and face hospital admission on my own.
This might not seem like a lot to most people but A&E fills me with fear, I've just had too many bad experiences of not being listened to and that is even worse when you can't breathe properly or see properly. When I realised there was a good chance I had Covid I had a counselling session focused on how I could help myself should I need to go into hospital. I knew I could pray and use my mindfulness techniques and put an app on my phone in case I needed some additional help with that. I knew I would have my phone and could message people. But I needed more tools to be able to ground myself if my anxiety started getting out of hand. My toolkit included:
A metallic heart with a bell inside (sounds like a meditation ball) which Rachel gave me - so both a gift from her, a tactile object and a soothing sound
A holding cross to help me in prayer and to hold as a way to self soothe
A weighted lap blanket to put on my lap much like a high l hand of a loved one
A blackcurrant tea light in a pot which I've had since primary school and still smells strongly bringing back very positive memories
iPad, long charging cable and power bank to allow me to mindfully draw and create digitally
A document with all my medication and conditions so I wouldn't have to worry about how to remember it all
Less than a week after preparing this kit I had to go to A&E. I had to hug Rachel not knowing if I would get to do that again. Then Mike drove me to A&E and had to drop me at the door and leave. Just writing that I can't believe I did it. But I did; and I was there for 4 hours and I didn't have even one panic attack. I used my tools, I created, I was mindful, I prayed and others prayed for me, I was honest with the nurses about my anxiety and I did it!! I faced my fears and I am proud of myself and so thankful to all those who helped me.
The final fear I have faced is one I really hoped I wouldn't have to face…..
I can survive covid!
Having not gone anywhere since March to avoid catching Covid I sadly caught Covid. There has been an outbreak at Rs school and sadly she must have caught the virus, was asymptomatic and I caught it. All of her cleaning and care, the systems she put in place and the responsible way she balanced going back to school with protecting me could protect us from her actually catching it in an exam hall. We knew it was a risk and it happened. We still believe it was the best thing for R to go back into school for her GCSE year and thankfully as I write this I am on day 12 with medication working and I am breathing much better. The doctors, nurses and I now believe that I can and will survive Covid. I will have to rest for many weeks and months, but it won't beat me.
A few people have asked whether I regret shielding for all these months since I caught it anyway and the answer is NO. I have caught it from one person only so have had a low viral load, I have kept away from all other bugs and so am as healthy as I could be to help me fight it, and I have learned a huge amount about myself in the process. There are no regrets, they are a waste of energy, there is only thankfulness for the blessings in every day and the hope for the future.
There's one other thing I want to share about 2020 which has never been a fear of mine, but I know other people worry about….
The world is full of people who care.
Watching the news and reading the papers we'd be forgiven for thinking that humanity is selfish, ungrateful and uncaring. But that is not what I've ever thought and the covid pandemic has brought to the fore the innate goodness of people and the way we care for each other.
Neighbours have helped neighbours, community groups have sprung up (such as our own a Earley Help Hub) and have been inundated with volunteers, people have stayed home to protect the vulnerable, family and friends have supported each other physically and emotionally, and we've all realised the value of key workers and carers as well as our amazing NHS.
Of course there are exceptions to the rule, but I believe that where people aren't behaving in a caring way that's probably because they need to be cared for themselves.
One of the most maligned groups of people are young people and especially teenagers. Well I want to big them up. My daughter was absolutely committed to shielding me to keep me safe, I was blown away by that gift she has given me. But more than that, her friends have supported her in supporting me. They have worked together online, they've chatted together online, they've group called, they've arranged socially distanced meets in our garden and more. Her best friend even kept herself safe in order to come to a social distanced separate tents sleep out in the garden for Rs birthday. They have supported each other and by following the rules they have protected the vulnerable in the community, not just me. They rock. And I know that the majority of teenagers and young people have done the same, because they care! I have no fear for the future in their hands
Sunday 8 November 2020
Two minutes can feel like an eternity for children, it can feel like an eternity for many of us. Sometimes it's good to have something to focus on as we spend two minutes in silence.
I've created this 2 minute time lapse video of me colouring in a poppy with the idea that this could be a good point of focus for anyone of any age.
Or perhaps you would like to colour or draw your own poppy in the two minutes silence, in which case I'd love to see it.
At the going down of the sun
And in the morning
We will remember them
Wednesday 28 October 2020
This is a poem I wrote a few years ago which seems even more important in these covid times. So.... I've recorded myself reading it
Waiting on waiting
Life's next adventure
Could just be passing
Rather than waiting
I should be squeezing
Every opportunity coz
Life's to be living
But life's not like that
Not mine anyway
I'll hit a stop sign
Traffic light red
Again I'm waiting
Waiting on waiting
For answers to questions
For new life solutions
Sometimes the waiting
Involves a slowing
(Might look like waiting)
If you're not concentrating
But in this waiting
There's action brewing
Adjusting my living
In the waiting