Tag Archives: chronic illness

Unlocking – The Realities

Covid-19: The UK Government's Communications Own Goal

I am continuing to reflect on why I am finding coming out of lockdown and shielding much harder that I found being in it.

When we were all locked down, there was a huge element of ‘all being in it together’. No one could go anywhere (that was not medical or food shopping), because there was nowhere else to go. That fact that my illness and disability means that I could not go out made little difference, because no one could. I was no longer ‘missing out’ on anything, because everyone was. There was nothing really to miss out on. Though I realise it must have been far more frustrating for the able bodied with energy to burn and social contacts and hobbies to maintain.

(I am acutely aware that many people did have to continue going to work to keep what was needed in society going, who could not choose, or be instructed to stay at home. They had to go out, risked their lives doing so – and I am incredibly grateful to them.)

There was much talk at the time among the chronically ill community about how now everyone knew what it was like for us being stuck at home pretty much all day every day, relying only on the internet for social interaction. Hopefully that part of the experience that will be remembered.

Then as lockdown began to ease, places began to open, possibilities were there again. And along with the dilemmas coming out of shielding brought, were the knock backs.

As other people begin to return to A Normal, came the whole new realisation that I was left out again, remembering how isolated life with chronic illness can be. Things are happening that I cannot go to, however much I want to. In the online support that had grown, even if just in text messages or social media posts, people are missing because they have gone to find their new normal. I absolutely do not begrudge them that, they have lives to be getting on with and I would be if I could, society has to get back to some way of functioning – but it is beginning to make a massive difference to those of us ‘left behind’.

It is a reminder, if I needed it, of what I am excluded from, what I miss, what I can no longer do. None of this is helped by the fact that my health has deteriorated, unrelated to lockdown, but concurrent with it. I cannot even begin to return to my normal, because my normal is a different, lower, level now. But even if I could, the risks of coronavirus feels too risky for some of what I might have been able to enjoy before, like a trip to a coffee shop, unless I can sit outside away from a crowd.

So, all power to those who are finding a way to get back to some kind of life. I genuinely am delighted, but please don’t forget those of us whose lifestyle and restrictions you had a glimpse of for a few months. We are not your responsibility, and you should not feel bad for living what life you can again.

But perhaps there are some lessons that have been learned that can be carried onwards:

  • remember something of what it was like to be stuck at home with nowhere to go
  • remember the connections you made and don’t leave them behind,
  • remember all those useful tools you have discovered that enable people to connect with what is happening from wherever they are and continue to use them with those still locked at home.

Meanwhile, I have to find again, the value and worth of my restricted life, outside of what everyone else is, or is not, doing. And I am very grateful to all those who are a part of my world and the life that they can get on and live.

Unlocking – The Dilemmas

Stay home, stay safe and stay well

Lock down and shielding made life very simple, if lonely. It was quite clear, I could go nowhere and see no one. All contact had to be virtual, which was tough at times, but a lovely new way of connecting.

Then lock down began to be eased, and shielding “paused” three weeks ago. Now life has become much more complicated, because I have to be the one to make decisions and try and manage other people’s expectations of me. Service things are very easy, the internet will provide most things I might need to buy or the lovely Mr W gets the food. I have had several medical appointments over the phone quite effectively, and when I have had to go in, they are entirely geared up for safety. I do not, it turns out, need to go to the pub or restaurants. I have not been able to go to a cinema or theatre for a long time, I have no need of a casino, bowling would be a disaster and church comes to me via zoom. We will even survive without a holiday.

The difficult decisions are about people – people that I love. Who and where. I have to decide that for myself, what I think is safe and what level of risk I am willing to take. With lungs like mine, people are very dangerous at any time. I do not really need a cold, never mind Coronavirus. They have take a major setback from the pneumonia I had earlier in the year and I am still struggling with that. But no person is an island. Seeing people is good for anyone’s mental health. However physically exhausting that is, it is always one of the trade offs I am willing to make.

I am having to do all the decision making on who I am willing to see, who I heartbreakingly have to say no to, when it is only sensible to see people outside (and I find sitting outside really difficult because I don’t have my specific, comfortable seating) and who it might be safe to let inside. That is before I even start to wonder if it is safe or advisable for me to visit anyone else. Is it sensible for me to go and sit in a park? Can I trust others to keep two meters away, or wear a mask correctly? I am being forced into choices I would rather not have to make about who I see.

I am finding the decisions totally emotionally exhausting. Finding the balance is hard work, and continually needs reassessing. I feel guilty about some of the decisions I feel I have had to make, and wish they could be other, however much they are made in love and with the best of intentions. It turns out coming out of shielding is far harder for me than shielding ever was.

I suspect I am not the only one.

Enabling Others to Meet Jesus (or who is going to mend the roof?)

I have written this for our Circuit Daily Devotions, a subject very dear to my heart. If you would rather here the spoken version, you can find that here.

A good stuff has been shared with us in our Circuit in the last few weeks about Equality and Diversity and what that means for us in the church.  It has been really good to have some theological underpinning for that, and much of it has been really powerful.

As part of the exploration I wanted to look about look at disability and accessibility. As churches begin to re-open, or think about it, these are important questions to ask. We have an opportunity to get it right (or better!) as we have to make some changes anyway.

“The Equality Act 2010 (using a definition from previous Disability Discrimination Acts from 1995 and 2006) defines a person with disability as someone who has a physical or mental impairment which is substantial and has a long-term adverse effect on his or her ability to carry out normal day-to-day activities. Whilst this is the legal definition which offers additional legal protections to people with disabilities, it should be remembered that anyone may be temporarily disabled (for example when recovering from a serious illness or accident), which may also require them to need additional support or adjustment. Many people with disabilities consider that their impairments are not the key factor that disables them. Instead they are disabled by a built environment that is not planned with their needs in mind, or they are disabled by the attitudes of other people towards them.”

The Methodist Church EDI Toolkit Module 4.

That maybe comes more alive in personal story, so I am going to tell you mine, and share some of the problems that I have in in church. That’s not saying that my problems are unique or that they’re all the problems that are possible, I’m just using my example to give an idea of some of the problems that people can face. The problem with a lot of the disability’s is that the disabilities are not necessarily visible, and you wouldn’t know that someone was dealing with them or you had to help them with them.  I hope the questions I raise might give you some thoughts about the accessibility of your church building.

In Mark 2, we hear the story of the men who brought their friend who couldn’t walk to Jesus. There was such a big crowd that they couldn’t get him to the door, so they carried him up the steps to the roof and made a hole in the roof so that they could lower him down to meet Jesus. Everyone focuses on the miracle of the man walking and the big question about Jesus authority, but we overlook the man’s friends and what they were willing to do so the man could get to meet Jesus.

For those of you that don’t know me, I use two crutches to walk, mainly for stability.  I suffer with a chronic inflammatory illness that effects most parts of my body.  It causes dryness – pretty much everywhere there should be lubrication in a body, I have little or none.  That effects way more than you might think.

None of what I’m going to say are criticisms, they are questions, pointers to make us think about our church buildings.  I’m also acutely aware that my accessibility may mean someone else’s inaccessibility – something that is there to help me may be making someone else’s needs impossible to meet – and for that reason the conversation needs to go on.

The first question I asked when we moved to our new Circuit was, “which church has the comfiest seats?”! That might seem trivial, but to me it is vital, and without which physical church in a building would not be possible.  But actually, when you have a disability, churchmanship, style of worship and a lot of other things go out of the door, compared with issues of accessibility in its widest sense.

  • But let’s go back to getting in the building.  I am incredibly grateful to have a Blue Badge, but that is no help to me if there is nowhere near enough the building to park, or someone without a Blue Badge is parked in it.
  • Next there is getting up the path, hoping that there are no steps.  Is there a drop kerb where necessary – and nothing obstructing it?
  • What about the entrance into the building?  Is it level?  You would be amazed how big an obstacle a raised door frame (there must be a technical term for that!) is when you are are wobbly, in a wheelchair, with a pushchair, or just have your hands full. Is the door too heavy?  Can someone open it by themselves?  Is there someone there to open it for anyone who needs it (remembering it might not be obvious who needs that help)
  • Can I find an appropriate seat?  I really need to sit with my right leg in the aisle, preferably with a large space between rows.  Pews are quite simply an impossibility.  Would someone let me have the seat I need, or would I be “taking my seat”? Can I sit at the back, or the front, if that is necessary for my disability?  Is the seat comfortable?  Can I shuffle and change my position in it to move the pressure points?  Is there a way I can raise my legs if I need to?  How long I personally can sit comfortably is very limited (and yes, it’s less than an hour!)
  • A lot of people with disabilities are very energy limited, and cannot arrive at church half an hour early to get the seat that they need, they may need to arrive at the last minute and need to be able to have the right space.
  • What is the lighting like?  Is it too bright – or not bright enough…!  Everybody’s needs are different.  Is there perhaps the possibility for some individually controlled lights?
  • That also applies to screens.  Are they in the right place?  Are they legible?  Are they too bright, too dark or using the correct colour contrast?  (Different colour contrasts work better or worse for different people, so it can be tricky) I actually have my own individual screen at our church, so I can set it to the setting I need.  Is that a possibility in your church?
  • Likewise, if you use videos in worship, can they been seen and heard by all?  Is there some way their point can be explained.  I love a video in worship, but can rarely process them in that space.
  • Are there paper copies of words?  Preferable in large and appropriately line spaced text?
  • Can someone manage to carry, or hold during the service, anything that you are asking them to. Normal hymn books are really hard to hold and turn pages if your fingers or wrists are not good.
  • In break-out groups, can everyone understand what you want them to do?  Is everyone able to participate?  Can everyone hear, process and respond in that environment?  Can there be an alternative option?
  • How do we use language?  Do we invite everyone to “stand to sing” for example?  When not everyone can stand – or sing. Do we use phrases like “everyone can do this” – can they?
  • Is our service very singing focused?  My illness means that I can’t sing.  I appreciate what a great tool in worship singing is and one I always used a lot, but if someone can’t sing are they excluded from worship in a big way? I guess post-lockdown we are all going to have to think about that!
  • Do we speak at a speed that people can hear and process?  It takes me a long time to hear what you have said, process in my mind what you have said, and then respond.  That applies even to things like the Lord’s Prayer, which I have to dredge from my mind and process through my brain before I can say it –  slower than most.  I am usually a couple of lines behind and give up.  I stand no chance of remembering a response to a phrase in a prayer that you might ask me to share in, or what the lead in is that I am meant to respond to.  I’m fine with that, but please don’t be offended – and be aware!
  • How does celebrating communion together work?  Is there a way to be a part of the body if you can’t kneel at the rail with everyone else, or even stand? Have we found a practical way around that?
  • And after the service?  I love to share fellowship, to hear how people are and what is happening in their life, but it is incredibly hard to have that conversation in a noisy room where everyone else is eagerly doing the same.  Is there a quieter space where anyone who needs that can go and talk without the aural distraction?

As I said, that’s my experience, others will each have their own story.

No church can meet all these needs, But it is good Christian living to be aware of other’s needs and do what we can to make church buildings and services as accessible as possible. Have we at least thought that they may be needs, and ways we could work around them?  What is most important is to ask people what works best for them, and be willing to do all you can towards that.

I am very happy to share advice or experience.  Better still ask anyone you know has needs how to make worship more accessible what would help them – don’t assume.  But also, don’t forget those who won’t say.  Try and think if what might be excluding somebody and try and think of an adaptation before they have to ask.  Try not to assume what someone needs…

And for those who can’t access physical church at all, I have some thoughts coming in a couple of weeks…

We thank you Lord
for the uniqueness we each bring,
for insights,
gifts and challenges that we all have.

Thank you that all are welcome,
to your love,
to your place of worship,
to be in your presence.

Help us to be aware
that our normal
may be restricting someone else,
or keeping them away.

Help us to be bold
to ask for help,
to share our needs

And help us all to listen carefully
to what the needs of someone else are
and seek to help.

God of love and acceptance
help us to meet together
in worship of you,
that we may learn
more of one another’s story
and through that
learn more of you.

Let Us Build a Church Where Love can Dwell