I have a friend, now in her ’80s, who has had MS (multiple sclerosis) for nearly 50 years. She does not have sufficient muscular strength to lift her feet onto the feet rests of her wheel chair; she does not have the muscular staying power (she can exert a little pressure for a few seconds but for a few seconds only) to operate an electric wheelchair, a computer, a disabled lift or a chip and pin machine. She can stand for a short while and shuffle for a few steps as long as the soles of her shoes are shiny and the floor smooth. She cannot sit in an upright chair without arms as she would topple sideways, she can only drink a cup of tea if it is in a thin porcelain mug or in a paper cup so that she can can wrap both hands round it and it is not too heavy for her to hold.
Yet, she lives on her own, has a home help for half a day every two weeks, cooks for herself (no ready meals allowed in her kitchen), bakes her own bread, grows her own tomatoes, salad leaves, strawberries and black currants in her flower-deep garden, provides me with basil plants, morning glory plants grown from seeds and innumerable flourishing cuttings for my garden, sits on a number of committees monitoring accessibility and is the accessibility/disability consultant to a couple of large architectural practices.
So well has she organised her ‘coping’ strategies that it is only when her roster of home help/friends who take her shopping fails or some event totally outside the norm occurs that her disabilities really impact on her life.
I had thought that thanks to my various house adaptations and to my oxygen therapy (see here for more) my electrosensitivity was really no longer much of an issue for me, but…
I was called for Jury Service a few months ago and, having never done it, I said yes. However, I did call the ’recruiting office’ to tell them that I was ES and that, depending on what was allowed in the court in the way of laptops and mobile phones, and what sort of lighting they used, I could have a problem. They were extremely helpful, said that no phones or laptops were allowed in the jury box but that barristers could use both, and that they thought the lighting in the court was LED bulbs rather than fluorescent. So I decided to go for it – last week, as it happens.
However, what I had not taken into account was that, to get to Southwark Crown Court, I would need to spend 45 minutes on a bus through central London (fluorescent light and surrounded by busy mobile phones), then walk for 4o minutes along the embankment with nothing between me and the 42 mobile phone masts on the north side of the Thames except the river. Once at the Court (surrounded by 17 more mobile phone masts), the 150 odd of us who had been called were ‘assembled’ in the Jury Assembly room which was wifi enabled and where you could (and most people did) use your mobile phone, until you were picked, at random, to sit on a jury. As it happened, I was not called on day one so spent the whole day sitting in the Assembly Room reading a book. We were allowed out for lunch for an hour, but though pleasant, as the sun was making one of its rare appearances that day, that was no better in ES terms as I merely swopped the in-built wifi of the Jury assembly room for the wifi bath that is the city of London where, in a drive for connectability, Boris has wifi enabled every lamp post.
I did not feel ill but I was very tired on the evening of day one. Day two looked as though it would follow the same pattern and I started to wonder whether I actually would make it through to the two weeks. Around lunchtime on day two I therefore went and spoke to the Jury Master’s assistant, who could not have been more helpful and charming. We had a long discussion about ES after which she went to consult with her colleagues who finally decided to ‘release’ me immediately. Sensibly, I guess, they decided that if I was likely to fall by the wayside it was better to have me do so there and then rather than waiting for me to get stuck into a case.
That was Tuesday and we are now Sunday, five days later. I still feel extremely tired and, while not actually ill, I feel very distinctly grumpy and under par with a slightly dodgy digestion and absolutely no energy. And all of that for a day and half doing what most of the rest of London does five days a week, 52 weeks a year… But because I have got so used to the coping strategies that I have set up over the last few years, I had quite forgotten that I cannot do what the rest of London does as a matter of course.
I only tell this tale to highlight the fact that all of us who suffer from ‘disabilities’ – and that most definitely includes those who have serious food or chemical allergies or intolerances – develop coping strategies that enable us to get through the day and which become so second nature to us that we no longer even notice them. (I, for example, whenever I go into a ‘new’ room, stick my nose up the lamp shade to see what sort of bulbs they are using. I only notice that I am doing it when I get a very old fashioned look from whoever I am with who is wondering what on earth I am doing…)
But, although, if we are to remain sane and get on with our lives, we do need to ‘cope by habit’, we also need, if we are to get the kind of help that both we, and others who may not be quite so good at coping need, to remain aware that we are ‘coping’. I draw the analogy below, only because it will be a familiar one to most of you, with gluten free breads…..
When we first started working with gluten-free bread the average g-f loaf was so deeply undesirable that coeliacs greeted any bread that would not break your toe if you kicked it as the most delicious thing they had ever tasted. In fact, if compared with a ‘normal’ loaf, it was no more than just about acceptable. Which is why, when we taste test ‘freefrom’ foods, we always include at least one ‘normal, non-freefrom’ taster in the judging panel to benchmark the products against the non-freefrom version of the product.
In assessing what is needed to help those who are food allergic, intolerant or chemically or electrically sensitive we need to remember what we/they can not do, while working to ensure that the ‘can not do’s are reduced to the minimum. Which requires the kind of split awareness that not everyone finds that easy….