Living with a disability – a personal journey

When I googled the following terms, my first hits were:

Inclusion body myositis (IBM) is a progressive muscle disorder characterized by muscle inflammation, weakness, and atrophy (wasting). It is a type of inflammatory myopathy. IBM develops usually after age 50. The symptoms and rate of progression vary from person to person.

Type 2 diabetes is a common condition that causes the level of sugar (glucose) in the blood to become too high. It can cause symptoms like excessive thirst, needing to pee a lot and tiredness. It can also increase your risk of getting serious problems with your eyes, heart and nerves.

I want to talk about disability and how it now affects me, so may help others. Going back around three years, I was diagnosed with both IBM and Type 2 diabetes, and the impact of the two conditions has over time become increasingly apparent, although the rate of change is slow enough not to register much by way of day by day or even month by month deterioration. I am mindful there are many a lot worse off than me and, like me, don’t find talking about something so personal, easy. I don’t particularly want to elaborate, especially since in days gone by I (thankfully) had little requiring obvious input by health practitioners and had registered no disability as such. Also, I would have been one of the first to be impatient when I heard folk going on about their aches and pains. In my case, the obvious effects of my conditions now is that there is a lot involving hand and leg movement and swallowing I can no longer do effectively, compared with not that long ago.

I like to think, I always tried to respond empathetically when I saw people with an obvious disability and, in the case of something like mental health (lack of), the less obvious. In fact, one of my early forays as a community worker was to help set up a project for helping people with mental health issues (Growing Together). I had two early memories that made me more aware of dealing with disability, on top of the obvious one as far as my project went – mental ill health. When we set up policies and procedures, one that we were told was a must was “Equal Opportunities” (this was in the days before the 2010 Equality Act) and a lot in what we set out to do was covered in that policy. I recall six categories that were emphasized when it came to treating people equally: race, religion, age, sex, sexual orientation and disability. As I recall, we were conscientious when it came to doing what we said “on the tin”. One amusing memory was when we converted a shop to be our resource centre, and installed a disabled toilet, and years later thinking we did not have a single wheel chair user and the space that was tied up might have been better used as an office. While wheelchairs are sign used to represent disabled access, the reality, as I was later to learn, was that disability covered a lot more, including a lot that is unseen.

But it was only when later I had my own disability that I could truly identify with issues a disabled person has to face. For me, the first one is frustration that things, I once took for granted, I could no longer do. A “silly” example was in the recent cold weather I could not turn a key, given my limited hand strength, and nowadays I struggle climbing the stairs if somehow encumbered. When it comes to eating and swallowing, it really is slow and steady. In fact, there are many different operations, I once gave no thought to, I struggle with. Then there is the matter of carers – in my case it is my long suffering wife. While it sometimes lets me off the hook, for example these days I do not put the rubbish out, it is hard to accept help – although in many cases I can find ways round my disability. And maybe that is the point – the focus is, or rather should be, not on what I can’t do or can only do with difficulty, but rather what I can do and finding ways around the more problematic areas, even if I end up taking more time than those who don’t have my disability.

I suppose the salutary lessons arising from the above, include making the most of whatever ability we do have and do so with thankfulness, appreciating the people that offer and provide help when it is needed (including an army of unpaid carers who give up much) and to be sensitive to the struggles of other people.

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