Health and Safety

Well, this week I got a letter from Childline (the back up plan for if respite cannot happen), and here is an interesting dilemma!

Ok, I cannot volunteer there because they cannot take people who are unable to come down 5 flights of stairs, as in a fire they would be a health and safety risk.

Now, which is this - a health and safety issue I should concede to - or is it discrimination? Imagine if that led to me not being able to work in lots and lots of places, because they were on the 5th floor? What is the limit - is it you can only work in jobs where you can be on the ground floor?

Throughout the day, interesting conversations took place. The deputy at the pixie club coincidentally decided that we would do a fire drill. It's not a situation I've worried about too much at work, as when the adrenaline kicks in, I could get me and the pixies out, and it's all ground floor. Stairs have been the lifetime nemesis. I have always had difficulty going down them - way more than up. It feels like my brain is trying to refocus when I am doing it. Is it my wobbly leg syndrome? Is it my inability to do sequential activities quickly syndrome? Is it a lack of depth perception (how do you test for that then?)

At the end of the fire drill, a 5 yr old pixie plaintively asked the deputy what would happen if I (that is me, Miss Fairy Sparkle), could not get out and I got burnt to death? (Not because I'm disabled, just a what if question).

(Yeah, that puts a heavy perspective on it, when a 5 yr old asks with big eyes).

Not a problem, says the deputy, that would never happen - she would bodily carry me out.

And this was AFTER her appraisal.

Later, a close friend and I were discussing the matter, and he said, he would look up the law for me on discrimination, what with him having studied law, but um, yes, he would find it hard the thought of me being somewhere I couldn't get out easily.

Not once has he ever seen from me anything other than the slowest and most awkward looking descending action on the stairs. Bit of a hard symptom to hide/abnormality/freakery/boring to watch one that.

Then later, my close friend's mum who is a home help, spoke about how she has been told in a fire, just to leave her clients in the house, get herself out and that's that.

Reader, I am stumped. If I was able to write a disclaimer saying that I was ok with taking the risk, and would hold no one responsible for my crispy demise, well why couldn't I do that? How are all the many other disabled people to work if this is a 'get out' clause? If there was a lift they could still say nope to me, because well, you're only to go down stairs in a fire. So, beyond raising Scotland to the ground and starting again, tricky one, on the old access front.

However - is that a fair action? I know what it takes to make some tough health and safety decisions - and people might argue they would feel guilty letting you risk your life like that. Now, this is where living in Glasgow, puts this into sharper focus - this is the land of tenements and high rises, and dodgy lifts is it not? If I want to be really safe - best not visit any friends any more ever again.

When you have been homeless, and you get offered unsuitable accommodation but hey-ho at least it's not up flights of stairs you might not manage - well that's all right then.

As a single person - that disclaimer would be signed in a jiffy. If I were partnered, well, I would consider hard to be honest. No matter which way I look at it - 5 flights of stairs really is the best way to demonstrate - yep, my leg's are crap, and I should have got a refund at birth : ) (Yes that was also a CONTROVERSIAL thing to say).

Or have I just been on the dishing out end of health and safety for too long?

Lunacy v lunacy

Very Important Disclaimer.
I have had ME for lots of years. It is vital that ME gets better recognition as an illness where people have to be given allowances for what they cannot do, and not be pushed too far. At the moment, my life is not the best advocate for that. No parent at work knows I am ill, and I am aware if they knew I had ME then I too could be placed on the pedestal of ‘Oh, yes, I know this lady with ME, but SHE can work in childcare – so why aren’t you able to do a tiring job like that?’

Someone said to me recently that its not what you are able to do as a disable person that is important, it’s the choices you make. So, what I am advocating for here is merely my choice – it’s not a choice that everyone with ME maybe looking for, but I hope it makes sense.

I am realising that it is so important to me to be able to choose what I do with the limited energy I have, but to also have it recognised what I need when my energy levels are low.

I went for my medical this week from my GP for respite care for looking after children. I suspect that part of the success of her responses came because they find I’m tired but I want to do these conversations easier than I’m tired and I need help. I explained how much I was prepared to do in order to save up my energy so that one weekend a month I can look after a child in my own home. She was impressed – you have really thought this through – this sounds great!

Leading up to doing this, there has been such a lot of debate in my head. What if I project all my well bits, and then get the not well bits ignored when I really need it? What if I get accepted, and then one day if I have my own children have to fight for the opposite – I need help, and I have exactly the same symptoms? There is another lady with ME doing respite care that has been recently approved. The assessors are not deterred when you say you have DLA.

DLA is a benefit awarded on the basis of your ability to care for yourself and walk. I get low rate – and it’s awarded on the basis I have difficulty with both. Now, the more I’ve thought about it, the more confused I am. I feel like I am only able to define my disability on the boxes I have to fill in on that form – so what happens if I want to cook a big fancy dinner – or look after a child that requires both feeding and caring? According to the form – well, I need help with that all the time.

It doesn’t explain that no matter what I do, my concentration is poor and I feel ill – but that doesn’t stop me from being able to care for myself and another child. I just have to rest more, and adapt more in order to do it. However, no DLA, no WTC, and I would be unable to afford to live, as I am too unwell to work full time.

Being treated as a fully functioning adult at work, means when I do have to defend how I manage to look after children (you do know that they can run fast don’t you? you do know that they can have difficult behaviour?), is sometimes quite alien – as I have to find the words to explain to someone who is just looking at me with – you do know childcare is exhausting?

Looking after children can cost me a lot of time in bed. Now, I am not advocating self-destructive behaviour – look at me, what a good soldier am I, battling against the mighty ME by pushing my body to the limits! That kind of behaviour can lead to very bad relapses. What I am saying is – I would like to live my life in a way that if I have to spend days in bed to save up days of energy – I’d like to spend that energy on what I love, and sometimes that might be in a crazy way.

Pushing to do respite in my head is actually a sign of lunacy – but something tells me deep down – that it’s the kind of lunacy that works for me. Ironically – if I got approved, I’m already way more motivated to taking rests when I’d rather be doing things – because the goal looks so much more fun : ).