As proof that I am truly in tune with the zeitgeist, on the very same day that I am returning to this blog to finish and publish it (having had to abandon it to rest my eyes for ten days), Frances Ryan has published a piece in The Guardian on the same theme: Covid lockdown opening up world for people with disabilities. It is worth a read (after you’ve read my blog, obviously!).
On April 3rd my friend Tanya posted a haiku she had written on her Facebook page:
‘Into my prison
Crams the jostling world, wailing.
I pass round tissues.’
(Tanya Marlow, popular Christian speaker and author of Those Who Wait. Tanya has been housebound with severe ME for almost a decade)
There are a lot of strong and conflicting feelings in the chronic illness and disabled communities these days:
- a desire to empathise with people’s grief at being restricted and shut in, and to share the wisdom borne of years of experience of being confined to the house.
- fear that people will experience this lockdown, and think that they now understand what it is like to live with long term debilitating chronic illness having not experienced the debilitating chronic illness bit of the equation.
- immense joy and excitement that suddenly the world has opened up to include us much more fully (almost by accident) as it makes provision for the fact that now almost everyone needs to do everything from home.
- sadness and frustration that others weren’t really willing to make the effort to find these ways of including us before, and fear about whether they will in the future.
- amazement and hope at the opportunities and accommodations made for people to work from home.
- deep anger and grief from those who lost jobs, told by their employers, when they were too unwell to go in to work and asked for alternative arrangements, that it was not possible for them to work from home, but who are now seeing their former colleagues set up for home-working by those same employers.
When it was about accommodating a minority of sick or disabled people it was apparently too much trouble – not worth the money or the effort. Which can very easily feel as though we were too much trouble and not worth the money or the effort. That our lives do not matter or have value. When it is about catering for the majority, or the survival of the organisation concerned, it seems everything suddenly becomes possible.
I have lived largely cut off from what others regard as normal life for much of the last thirty five years. Now suddenly, from church meetings to National Theatre productions to tours of far-flung tourist attractions, this previously inaccessible world has arrived in my living room.
During the first three weeks of lockdown I attended morning prayer every day with other church members. (Not exactly contributing, it has to be said. 9am is not a time of day my body is willing to cooperate in any way whatsoever, but this I can now do from my bed with my eyes closed. And having that fellowship, that help to focus on God and look outwards at the start of the day; to feel a part of something – connected from the start of the day to the outside world from which I am usually cut off, and to people I know; to pray with others and for others; see friendly faces at a time of day which is always hugely challenging for me in terms of pain, and overwhelming symptoms, transforms my day.)
I ‘went to’ the Lent course every week, and didn’t need several days to recover as I did when it required me to go out; started a weekly support group on Zoom for people who live on their own; was asked to record myself doing a reading for the Easter Sunday service; sourced the music for the Maundy Thursday service which was on Zoom; and wrote several blogs relevant to current events which have been shared widely. I am now considering starting an online homegroup which I hope might continue way beyond the current crisis.
I had the best birthday I have had for years because I was able to see all of my close family and host a very short ‘party’ with far more friends than I could possibly manage to see in one day in real life, confined to my home and on such limited energy levels, thanks to now being able to beam them simultaneously (and briefly!) into my home.
I cannot describe the excitement I felt the first week our church service was broadcast from the rector’s study when he asked for people to do readings or prayers at home for future services and I realised that just maybe I could do that.
It is years since I was well enough to do a reading or the intercessions in a church service (or attend a regular homegroup). The effort of getting out to church, (even with a wheelchair, in someone else’s car, and with a ‘bed’ to lie on for the duration when I get there), dealing with the sensory overload of bright lights, noise, lots of people, conversation, a barrage of information, screens, trying to read the projected words to all the songs and liturgy, all in a short space of time, means there is no chance at all of me managing to read or lead intercessions as well at an actual service in the church building.
But now, suddenly, I could prerecord a reading or intercessions in my own time, in my own home, at a time that suited me, when there were no other demands on my energy. And, hey presto, I was doing the reading or prayers for a service. Taking part, contributing, being a full member, belonging in a much fuller sense than before.
The other day someone at the church morning prayer meeting where 20 – 30 of us now meet on Zoom to pray every morning said ‘We’ll never all fit into the usual room when we go back to normal’. Afterwards I cried. It has been so significant, so wonderful for me, to be able to join in with morning prayer, to pray regularly with others, to see friendly faces every morning, to feel included, to have activities which were previously totally inaccessible to me suddenly become accessible.
The thought that much of this will probably be taken away again is hard. For me, despite some huge extra challenges as a result of this crisis, this time has been life-changing in a positive way. This inclusion, this feeling a part of things, this suddenly being able to attend and contribute when previously I could not, this new sense of belonging.
In a Facebook support group for ME sufferers someone else also expressed this feeling of suddenly the world coming to us and allowing us to share more fully in life, along with the ensuing fear that it is only temporary: that, when the corona virus crisis is over, and most people can live normal lives again, those of us who cannot, and who have benefited inordinately from this huge effort to enable people to access as much of life as possible from their homes, will be left behind and forgotten again, too few, too insignificant to make the effort for. Left out and on our own again:
‘Circus! Opera! Church! Concerts! Games! When COVID ends they’ll all go outside and take the fun with them and we’ll still be here.’
For most people what is happening now is second best and they cannot wait to return to normal. A normal that previously automatically excluded those of us for whom being stuck at home, unable to get out to meetings or social events in person, will continue long beyond the corona virus crisis.
Of course many activities and meetings need to happen in-person for most people when that is an option again. It is important that church congregations meet and worship together when it is safe to do so. But I sincerely hope that, having proved that it is not only possible to record sermons and services, but even to livestream them, those churches who previously did not do so, will continue, in some form, to make Sunday services accessible to those unable to get there, so that housebound members can continue to share in worship with their church family rather than being cut off from it as they have been in the past.
And that they will think carefully, along with all sectors of society, about what else that has been made available in recent weeks can be made more accessible as the norm, to those who are stuck at home long term. It would be tragic – and a loss to churches, and society as a whole – to fully include us only for this time when the able-bodied also need these alternative forms of access. Greater inclusion enriches life for everyone.
Opportunity knocks for us all: the chance to involve housebound, disabled, and chronically ill people much more fully in life from now on, using the lessons learned and the technology used during this lockdown. Those of us in the disabled and chronic illness communities call on you to take up that challenge.
When you move on from this, and life opens up for you again, make sure that your life opening up is not at the expense of the lives of disabled and chronically ill people being closed down and becoming more restricted again. As you leave our world, do not close the door and leave us behind. Find ways of taking us with you.