Tag Archives: disability

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

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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

#RareDiseaseDay- My Experience

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Today is Rare Disease Day  In the interests of education and sharing information, I decided I would tweet a ‘normal day’ just to give an idea of a day in the life of just one rare disease looks like.  Then I thought I’d make those tweets into a blog to make it easier to share wider.

I was surprised to discover my illness came under the Rare Diseases Unit, but it does.

I don’t sleep well. Apart from,ahem, the obvious results of how much I drink, joint pain and dryness disturb me. At some point during the night I woke up with the inside of my cheek stuck between my teeth – that’s what a dry mouth means. So that’s left a large sore spot in my mouth to contend with. I also wake up in agony(not a word I use lightly) from my sore joints. Mainly my hip. Dry eyes can also wake you up in screeching pain, though the new ointment I’ve got is helpful (but not available on prescription).

First stop when I get up is a drink. I drink all day, usually boiled water as the warmth helps. Then comes a nebuliser for my dry bronchial tubes, an inhaler, tablets that artificially release at least some moisture into my mouth, pain killers and a mucolytic.

Eating is actually really difficult. With limited saliva it is difficult to chew or swallow, anything with rough edges cuts my mouth. If I’m not really careful I choke, which always adds some excitement to the day – and raises the potential for chest infections 😦 

If you don’t have a chronic illness, you may not believe how exhausting having a shower is – even more so washing your hair. But I have to wash my skin with an emollient. I don’t dry myself, just wrap myself in a towel and collapse in a heap somewhere to rest.

When I’ve recovered enough I then have to coat my hands and feet in a strong urea cream. (This makes A Mess and creates a lot of washing) In amongst all this I have to turn the washer on – thought I’d done it last night, but brain fog means I’d set it up, then not turned it on. This kind of thing happens often!

I then need time to recover from getting up. Oh and I have to be very careful what I wear. I struggle with zips and buttons, and seams in the wrong place are a nightmare.

A recent side effect of my meds is my hands shaking, which is adding a whole new excitement and jeopardy to life.

Oh and I forgot cleaning my teeth. My whole mouth is a nightmare caused by the lack of saliva. I have to use special high fluoride toothpaste, but still suffer as teeth aren’t happy without saliva. I have yet another sore tooth that I’m trying not to have extracted. Sprays and gels are available, but the sprays lasts about 30 seconds and the gel tastes disgusting and doesn’t last much longer.

And then there’s eye drops. Despite having punctual plugs (don’t look that up unless you’ve hot a strong constitution!) My eyes are so incredibly dry, which is is very sore. I use eye drops at least every hour, often more. I’m never without a collection of these.

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And the post brings a hospital appointment – of which there are many when you have a multi-systemic #chronicillness.

This is one of my recent finds. An absolute Godsend for my dry nose. Really helps with the stuffiness and bleeding – and consequently the sniffing! Oh – also not available on prescription…

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Saturdays are a bit different to my usual. The lovely Mr W tries to take me to look at a different view and have a coffee. Living in beautiful Derbyshire helps 🙂

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Fresh air is life-enhancing, but exhausting. I do like to walk short distances, but I walk very, very slowly. I struggle with balance, joint pains and my breathing. I use two crutches.

Quick pit stop for the shopping. We buy a lot of pre-prepared foods because energy and cutting peeling are a big problem. We tried grocery delivery, but always ended up having to go out to buy what they’d not brought/ruined.

Now I’m going to sleep. If I don’t sleep for a reasonable amount of time in an afternoon I am useless. My balance gets worse the more tired I am and I can get very shaky.

Afternoon meds – more painkillers and mucolytes.

Evening meal, we call it tea up here 😉  As well as sore thumb and finger joints my hands have a nasty habit of spasming. This cutlery really helps me still being able to deal with some food myself. Otherwise the lovely Mr W cuts it for me.

*I forgot to say in my tweets, most food is pretty tasteless without saliva, which can make eating a necessary chore – but the company is good!

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I’ll finish off the rest of how my evening is likely to go now, before I fall asleep! I’ll likely snooze on the sofa, followed by nebuliser, inhaler, painkillers, mucolyte and more urea cream. Night time eye ointment and as a special treat on Saturdays and Wednesdays I have Steroid cream too.

Thanks to everyone for their interest today. I hope its shown how one #RareDisease #chronicillness plays out and effects life. All the maintenance is exhausting – on top of the disease itself.

There’s not much interest in developing drugs for #raredisease because the take up of such drugs would be so small due to rarity. I’m not sure what the answer to that is. But it would be nice if those things that are available to others with chronic illness are open to us.

Transfiguration and Disfiguration

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brooklyn_museum_-_the_transfiguration_28la_transfiguration29_-_james_tissot_-_overall

At our housegroup this week we were reflecting on the Transfiguration.

The first words of the meditation were “picture yourself with Jesus and his followers Peter, James and John as you walk up the steep path that is the spectacular Mount Tabor”.  One of those simple statements that pulls you up short. Well I know Mount Tabor is spectacular, and steep!  I went there many years ago.

tabor-galilea

Mount of Transfiguration 001
Mount Tabor – The Mount of Transfiguration

And yes, we took the transport up it.  But now I am being asked to walk it and that is beyond me – even with Jesus.  My illness and disabilities make that beyond me.  How I would love to be able to walk up a mountain, or even a hill or a small mound.

And one thought led to another.  If I can’t make it up the mountain, am I going to miss out on the mountain top experience?  If I can’t ever make it up the mountain, to the away day, to the social event, to anything that requires more than an hour of me sitting on a chair, to sit in a room where the lights are too bright, to be in an environment where there is sensory overload, too much noise, to do anything that requires more energy than I have (not a lot), (insert your own difficulty)… am I always going to be missing out on the special encounter with God?

The beauty of the TakeTime meditations is that Jesus takes you aside and asks you to share with him what is on your mind and in your heart. And God listens and speaks.

To me – God is the God of the Mountain Tops, but he is also the God of the Valley Bottoms.  I am with you wherever you are.  You can meet with me right here, as far as you can, or can’t, get. I am here and you are special.

But yet still it feels there is so much to miss out on, so much I can’t be a part of.  Not because of anyone’s fault, but my circumstance.

Is there anything that can be done to help me?  (My church is brilliant at helping me access community and God in ways that I can that fit outside the box – our housegroup is one example of that – but that is not everyone’s experience)

How can I help others meet God?  Perhaps sitting at the bottom of the mountain is the place I need to be to meet others who also have to sit there.

I have no neat answers, just some questions.

 

Mark 9:2-13 Good News Translation (GNT)

The Transfiguration

2 Six days later Jesus took with him Peter, James, and John, and led them up a high mountain, where they were alone. As they looked on, a change came over Jesus, 3 and his clothes became shining white—whiter than anyone in the world could wash them. 4 Then the three disciples saw Elijah and Moses talking with Jesus. 5 Peter spoke up and said to Jesus, “Teacher, how good it is that we are here! We will make three tents, one for you, one for Moses, and one for Elijah.” 6 He and the others were so frightened that he did not know what to say.

7 Then a cloud appeared and covered them with its shadow, and a voice came from the cloud, “This is my own dear Son—listen to him!” 8 They took a quick look around but did not see anyone else; only Jesus was with them.

9 As they came down the mountain, Jesus ordered them, “Don’t tell anyone what you have seen, until the Son of Man has risen from death.”

10 They obeyed his order, but among themselves they started discussing the matter, “What does this ‘rising from death’ mean?” 11 And they asked Jesus, “Why do the teachers of the Law say that Elijah has to come first?”

12 His answer was, “Elijah is indeed coming first in order to get everything ready. Yet why do the Scriptures say that the Son of Man will suffer much and be rejected? 13 I tell you, however, that Elijah has already come and that people treated him just as they pleased, as the Scriptures say about him.”

Good News Translation (GNT)Copyright © 1992 by American Bible Society 

 

***Do take a look at the Take Time meditations.  They are a brilliant resource for personal or group use.  We use them at our house group set up specifically for those with chronic illness or caring for those who have as a short and non-demanding group.  No great concentration or sitting for a long time required.  Just support, understanding of one anothers issues, meeting with each other and God.