Saturday, 27 June 2015

Invisible Disabilities

One day earlier this week, I was on the way into church on the bus. On the journey I found myself standing, as the seats downstairs were mostly taken. Standing can sometimes be a problem for me because of my MS. It is difficult to explain (or even understand… for me too!) but the experience of standing can be debilitating and result in energy depletion, heavy limbs and muscle aches.

Although most of the seats were occupied, there was one seat… one of the ones for those who are elderly or disabled… I kept standing.

Was it pride? Well, perhaps…

But I think it was also because I do not APPEAR ‘disabled’. I did not have a walking stick that day (although I do occasionally use one) nor any other outward indication that I am ’disabled’.

And yet I AM ‘disabled’. In fact, one recent (and rather surprising) discovery has been that the very fact that I have MS categorises me as ‘disabled’ in the provisions of the 2010 Equality Act.  But even forgetting all that, I know that standing for long periods is a problem, energy depletion is a BIG problem, cognitive function can sometimes be a problem and so on and on.

(I will spare you some of the further symptomatic details which restrict but which are not visible)

And, as if that were not enough, I also have a second chronic condition more recently diagnosed and rather more difficult to talk about. Three months ago I was diagnosed with Ulcerative Colitis.

Once again, I will not go into all the gruesome details except to say that there are very real restrictions caused by both my conditions, that they both are causes of fatigue and energy depletion and that neither of them  looks as though they are doing anything other than getting worse!

But, to the outward observer, I seem to be the picture of health!

Which is, of course, why I find it is difficult to choose to sit on these disabled seats on the bus!!

And so back to that morning a few days ago… After the bus journey for which I stood all the way, when I reached St Cuthbert’s we were about to begin our monthly lunchtime Bible Study based on the passages for the next Sunday’ services… and if you have looked ahead, then you will know that the Gospel passage on Sunday is about the daughter of Jairus and the woman who had been bleeding for 12 years. 

We cannot be sure, but I think we may assume, that the woman who touched Jesus’ robes would not have been obviously ‘disabled’. Her condition and its symptoms would likely have been ‘invisible’ to others.

I saw the connection.

But I was not just thinking of myself, but of the many (very many!) friends, family members, congregational members (past and present) and pastoral contacts who have conditions (physical, mental or emotional) that are not outwardly ‘visible’.

Let me be quick to say that those of us who have less visible disabilities often do not face the challenges of those who are more ‘obviously’ disabled. The very invisibility tends to mean (in most cases at least) that we do not face the same physical challenges. And we are not generally subject to such discrimination and prejudices as still exist in our society with regard to the ‘disabled’.

While for many people with MS, the effects of the condition are very evident and visible, for me and others they are not. And there are many others who have disabilities that may not be visible, but are nonetheless debilitating, challenging and awkward to cope with, and which put real (and often permanent) restrictions on life. I am thinking of the likes of dyslexia, inflammatory bowel disease, autism/Aspergers, depression, anxiety, and so very many more…

Both the Church and society have moved far in terms of support, inclusion and attitudes to those who have disabilities. But there is still a distance to travel.

Perhaps one thing we could still try to do is find an alternative description to ‘disability’ (and please not ‘differently abled’!) And another is to work harder at ensuring that being ‘disabled’ does not automatically imply that we are also considered as ‘disqualified’ from certain jobs, positions or roles.

After all, in the ‘West Wing’, President Bartlett seemed to do a pretty decent job in spite of his MS! Just a pity he had to start off hiding it!

Jesus' response to and compassion towards the woman with the bleeding tells us something about how God looks upon those of us who have any condition or disability, visible or invisible, and surely also tells us something about how we should regard them.

But none of all these musings resolve my problem with taking a disabled seat on the bus! Perhaps I should just carry a walking stick as a matter of course…


  1. I relate to this article on a number of levels. When I was in my late 30s I developed two invisible illnesses. One was a surprise, the other less so. When I mother was the same age she developed rheumatoid arthritis - I got something similar - so I was half expecting that as it is hereditary. I also developed the 1 Diabates. Actually both of these illnesses have the same autoimmune root. Over the 10 years since these things developed I have been on a similar journey. I have found both other's and my one reaction to these things difficult.

    These things change us and our relationships. Sometimes it is hard to accept the changes that happen. One of the hardest things for me, was not being able to play the guitar anymore. Now while this might have been a relief to some, for me it shut down a level of intimacy I had in my prayer life and I had to find other ways to pour out my heart to God, and others.

    However, I have been practising a Christian way of 'Mindfullness' This is noticing the things we can do and enjoy (by ourselves and others), noticing the small things - deep things and taking our minds off it when we are in pain (I recently had a 3 month flare-up) can be nearly impossible but perhaps not entirely. Also is can be a way the 'teach' ourselves and others empathy?

    I have recently seen two programs about war.. One was convening the awful convict in the 1860 between Denmark and Germany… Several times during awful battles sold ours would look up and see a Skylark overing in the air as if nothing was going on. The second was around the WWI conflict, when a soldier in the midst of an earthly 'hell' noticed a small flower growing out of the mud.

    I thought, that is a kind of mindfulness?

    Sometimes, 'hiding it' is the easier way, but then we can trickle out reflections of suffering and noticing, vulnerably and giving?

    Bless you.

    P.S. when I was really bad, I used to carry a folding stick… I was able to throw it away while back… praise be.

  2. Thanks Tim. This is an helpful and insightful comment. I much appreciate it!