This is the first part of a two-part post on Firefly Community on the subject of blogging about disability. In this part I talk about the potential power bloggers have to effect social change:
Freddie’s school are taking all the children on a trip to the seaside tomorrow, as a reward for all their hard work this year. I hope … no … I’m sure, he will have a lovely time, but I am climbing the walls.
Every worst-case scenario you can imagine is running through my mind, like I have my own personal disaster movie playing on a loop. What if the teacher’s attention was distracted and he wandered off. I can picture him lost and alone, how terrified he’d be, crying for me and wondering why I don’t come. I’m feeling breathless and faint just writing this; I almost started crying in the street yesterday when a string of thoughts like this came barrelling into my head one after another, unbidden. I was overcome by a visceral sense of panic.
The only way I managed to deal with it was to stop, take some deep breaths and force my mind to think of the things we will do together during the summer holidays, when trip day will already be safely behind us. We will go to the shops and learn about money, we’ll take lots of change and count it out together in the right amount, it doesn’t matter if it takes all day to go to one shop, and pay for one thing, because he’ll be with me.
I try to tell myself that his school are well practised in taking groups of pupils with additional needs and learning difficulties out on trips; it’s bread and butter to them. They will have conducted risk assessments, there is a high ratio of staff to children, and Freddie’s tendencies are well known to the staff, and documented in his Individual Behaviour Plan – but my mind will not rest until he is back safe in my arms this evening.
Anxiety, particularly about my children’s safety, has always been the hardest part of parenting for me. Not being able to get to my children if they need me, if they are alone, frightened, in trouble, ill, is my biggest, most stomach-churning fear. And it gets worse as my children get older. It starts with school trips, then sleepovers, scout and guide camps, school residentials, holidays with friends, then before you know it, they want to move out altogether, go off to University, leave their home town, and you, behind. And then, when they need you, and no matter how grown up they are they still might, you won’t be able to go to them straight away. At best, you’ll be on the other end of a phone, maybe during some of the hardest times of their lives. Age and distance does nothing to lessen that breath-snatching, gut-twisting need to be with them when you are afraid for their wellbeing.
There is nothing I can do to stop my children growing up, and nothing I can do to stop worrying about them. I can only hope that I have raised them in such a way that they can navigate the adult world with common sense, secure in the knowledge that they are loved and accepted, and can turn to us for support in any situation, without fear of judgement or rejection. There is nothing that would stop us from loving them – even if we do not like something that they do, we will always love them, and strive to help them.
I will never understand why some parents reject their own children, for reasons of sexuality, gender, lifestyle, or for any other reason you could name. I can understand why they might be afraid for their child, and how that fear might make them wish that their child was more ‘conventional’ so that they might avoid hardship, hurt and danger. But if my child’s being took them down a difficult or frightening path, I would want to walk beside them, to lend them my strength, no matter how scared or uncomfortable it made me. As a parent you have not failed your child until the day that you disown them. If that day comes, then you have failed them utterly.
To my mind, perhaps the most loving thing I can do for any of my children is to accept them exactly as they are. And then accept that they must grow up. Worry is simply the price I must pay for the privilege of loving them. Imagine how barren life would be if I had no one to worry about.
It’s Summer at last – the best three days of the year!
Actually, for us it hadn’t been the best. Freddie has been really struggling with the heat this weekend.
He had trouble regulating his temperature when he was a tot; any moderately warm sunny day would see him burning up and coming out in a dusty-pink rash all over.
As he got older the situation seemed to improve, and over the past couple of years we have even managed a couple of holidays in Southern Europe where the thermometer has hit 40 degrees at times, and he was absolutely fine. We are careful to keep him well hydrated, and either in the pool or in the shade; and we always take the buggy with its enormous sunshade (which is now a bit warped from being crammed into the kind of tiny suitcase it is necessary to take on a Ryanair flight if you don’t want to end up spending more on your baggage allowance than on your flights and accommodation combined). We’ve had a few running battles over sunhats, too, which have resulted in some very fetching photos of him in a spotty Pudsey bandana looking like someone’s Nan.
This weekend, though, he’s back to struggling again. He was listless and so warm to the touch on Saturday that his Nanna Jean gave him a hot water bottle full of cold water to hold to cool him down.
On Sunday he was listless still, and also grumpy. We could hear other kids in other gardens splashing in paddling pools, and felt guilty that, when we moved to this house, we got rid of the snazzy pool Freddie’s brother and sister had when they were little: we’re on a water meter now, and I’ve had a fight in my hands to stop Daddy drawing a maximum-fill line an inch or two above the bottom of the bath, like they did in WWII.
Then I remembered the little inflatable dinghy that my parents bought many years ago in a fit of seaside enthusiasm when we all went on a communal family holiday. Harry and Lucy were 5 and 2 respectively. We never dared let them have it on water; we always used it inversely, as a supplementary paddling pool. We found it stowed away in a corner of the shed where its rested, untouched, since we moved in. Since Harry and Lucy are now 20 and 17, it’s a testament to the quality of the thing that it still inflates, and stays inflated if you stick a bolt in the end of the valve that’s lost its cap.
By Sunday afternoon, though, Freddie was distressed and burning up. Calpol, the parent’s friend, was the only thing that provided relief, but before the four-hour gap between doses had passed his temperature was beginning to climb again. Yet we could see no obvious signs of illness.
When I went to get him up on Monday he said ‘forehead hurts’. I’d already decided to keep him off school. I opened all the windows and rigged up some makeshift shade in the garden, but he wasn’t in the mood for play.
By lunchtime he was showing signs of a tummy upset, so we spent the hottest part of the day in the relative cool of the downstairs cloakroom. For the rest of the afternoon he lay on the settee on a cotton sheet. He had a strop because I thoughtlessly provided a patterned one instead of a plain white one, so I turned CBeebies on, and that put a stop to that nonsense.
The only fan I could find was another ancient artefact. I might as well have stood there blowing on him myself, to be quite honest. By evening he had no energy left for any kind of nonsense, poor little chap. But Nanna Jean came to the rescue – she remembered that her fancy Dyson heater blows out cold air if you press the wrong button, so she bought it round and we left it trained on him all night. He had a much better night’s sleep: we, however, lay awake picturing the electricity meter whizzing round so fast that it would eventually burst out of the meter cupboard and soar into orbit, decimating members of the Dawn Chorus in a blizzard of feathers on the way.
I don’t know whether the headache and tummy upset were caused by the heat, or whether it was the brewing bug that made him less well able to cope with the temperature. Today he seems a little better and it is a little cooler.
You know, our normal British weather isn’t really all that bad when you think about it.
My post for Fathers Day on Firefly Community:
‘What do you give a man like this as a gift for Father’s Day? There is, perhaps, one thing that he might crave … I am the only person who could give it to him, and I would if I had the courage’:
I have seen a lot of criticism of ‘young people’ in the media and on social media over the last few days, much of it centred around their voting choices. It has been stated that young people who voted Labour simply did not understand what they were voting for; or that they were seduced into voting for Jeremy Corbyn because he was promising them something for nothing — because all 18-24 year olds believe the world owes them a living, and want everything given to them on a plate. Worse still, I have seen it suggested that the voting age should be raised to 25 or more. Most of this has been driven by the ‘Stale, Male, Pale, and Privileged’.
I’m also pale and stale, but not economically privileged; perhaps this is why I see things differently.
Older people are NOT automatically wise and knowledgeable. Wisdom is not the preserve solely of the elderly and ‘experienced’. Wisdom is a tendency one is born with. You know how some people, even at a young age, seem to have a knack for making good decisions and handling situations well? That is because they have this tendency. Yes, they will make mistakes along the way, but they will always learn from them. But there are others who lack this capacity, they just keep making the same mistakes over again: they will never be wise no matter how old they get.
Young people today generally possess far more knowledge than previous generations. This is not surprising since they have grown up in the age of the internet, and are accustomed to having a wide range of information sources at their fingertips 24/7. I used to worry about how much time my children spent on their devices until I realised that they weren’t just playing games or watching inane videos. They were using the internet to research, not just their homework, but the things that interested them. Their schooldays included lessons that I never had – Citizenship and PHSE. The RE curriculum no longer concentrates solely on the Judeo-Christian tradition, but has broadened to include not just other faiths, but ethics also. I have had several testy conversations with my daughter regarding my stance on some of the hot-topic ethical issues of today. She does not blindly agree with me, nor does she completely disagree in order to assert her independence. She has formed a nuanced opinion somewhere in the middle, and her arguments hold water. There are areas where I think they show naivety, but this is due not to a lack of ‘life’ experience, but due to a lack of a particular kind of experience. Many much older people also lack this particular experience, and display the same naivety.
It would seem that schoolchildren are being taught not just how to access information, but how to evaluate and prioritise sources. I was shocked during another debate with one of my offspring a while back, when they started lobbing about terms like ‘primary source’ and ‘secondary source’ with an obvious understanding of what they meant. I didn’t learn things like that until I went to University.
I enrolled in University at the age of 45, and studied alongside a group of people mostly less than half my age. I was in awe of their mental agility and energy. They soaked up information like sponges, and were open to new and unusual ideas: not blindly so, no, they would interrogate them, twist them this way and that to explore all the possibilities. They took old ideas and traditional forms and shaped them into something new. Have you ever read a sonnet about someone dropping their iPhone into a pint of beer? You should, it’s so much more relevant to today than ideas of courtly love. My fellow students may not have had a great deal of general ‘life’ experience (though some had a great deal of particular kinds of experience that some others may never have no matter what their age) but they were socially and politically engaged. And they were engaged with what’s happening in the world NOW. We should not discount their opinions.
When I was a teenager my school did not have computers, we were taught from dog-eared, slightly out-of-date textbooks. Many older people cling to dog-eared, outdated conceptions of the social and economic landscape of this country, and the wider world. But the landscape has changed. For instance, when I was at school it was common to have a ‘Saturday job’. My parents urged my kids to get themselves ‘a little Saturday job’, but such jobs no longer exist. My daughter and many of her friends, all full-time sixth-form pupils, routinely work all weekend, and one or more evenings during the week. In addition, now that she is too old to be a Girl Guide anymore, my daughter (and some of her friends) have enrolled in the Senior Section to become Young Leaders, because they know there is a shortage; they feel a sense of responsibility to ensure that other girls coming up behind them have a chance to join Rainbows, Brownies, and Guides too. Is this the action of selfish wastrels who believe the world owes them a living, and expect everything for nothing?
Not one of my fellow students wanted or expected ‘everything for nothing’, either. All engaged in paid employment alongside their studies, and, in addition, some also held voluntary positions. This persistent idea that ‘young people’ are layabouts who expect everything to be given to them on a plate is a load of baseless, bitter nonsense. Perhaps there are some selfish individuals who espouse this mindset of ‘entitlement’, but they do not come exclusively from among young people, or ‘poor’ people either (or any other of the epithets used to describe those who are economically disadvantaged).
On election day my daughter directed a good-natured, but not entirely tongue-in-cheek rant at her grandparents for their voting choices. The conversation threw a light onto the differences between her understanding, and theirs. Far from not understanding what she was voting for (or would have been – she’s a few months short of voting age) she was crystal clear. Her grandparents’ grasp of the policies and issues seemed rather nebulous by comparison.
This was a trait I saw repeated among other older people I found myself drawn into discussions with (but by no means all). Their choices seemed shaped by banner headlines, by who they ‘liked the look of’ (‘I like that so-and-so, you know the bloke, so I think I’ll probably vote for them’), or a desire to ‘stick with’ the same party they’d always voted for in the past, rather than by any great understanding or wisdom. Almost to a man (or woman) each one added ‘It doesn’t matter much at my age’.
It matters to their grandchildren.
My generation, and my own parents’ generation, grew up with the security of guaranteed free healthcare, free education, and affordable housing, and the knowledge that their human rights would be upheld. My children are looking into a future in which none of these things is guaranteed. If they want change, this is understandable. I would argue that they know very well what they are voting for – a fairer society. A society like the one that my generation took for granted, but which some among us, some smug, selfish and privileged individuals now want to deny to others.
Is it ridiculously naive and idealistic of young people, (or indeed anyone at all) to want a fairer society? Finland, Denmark, Norway, and the Netherlands don’t seem to think so.
Hello. My name is Kerry, and I am …
an opinionated woman.
I forget my place and state my opinion publicly, even though a woman of my background *must* be too unintelligent/uneducated to form an opinion worth holding.
If anyone challenges my opinion I defend my position – instead of meekly backing down like a ‘nice’ girl and accepting that they must be right even when their objection is based, not on some flaw in my argument, but on some flaw in my character or background that automatically invalidates any opinion I have.
I am guilty of forgetting that some people have a greater right to state their opinion than I do, and this right is not necessarily based on knowledge or experience. I am guilty of forgetting that I must not answer back to those who are my ‘betters’ in this hierarchy, even when their opinions are baseless to the point of inanity, or may be offensive or harmful to others.
Sometimes I am rude enough to prove my point.
Hello. My name is Kerry, and I am a Nasty Woman.
Several times during the past week I have been told that I should not share my opinion, and I should not answer back; because I’m not intelligent enough, not educated enough, ‘don’t get out enough’, it’s ‘not nice’, it’s ‘aggressive’. Now, when I share an opinion publicly I am aware that not everyone will agree with me, and I am prepared for some to tell me that I am wrong, but I would expect them to come up with some valid reasons why I am wrong, and to educate me in the error of my ways with solid argument. I do not expect to be ‘shut down’ simply by being told that I do not have the right to state my opinion. I do not expect to be told I show not openly disagree with those who state an opinion which may be offensive or harmful to others because ‘arguing causes upset’.
I might have been prepared to concede that during the election campaign, since I’m just a private individual, not a party activist engaging with the public, or an influential person with a huge social media following, it might have been better to keep my opinion to myself, but then an issue much closer to home came up, and once again I was told to shut up.
A visitor came to our house, someone very close to us. We were talking about a TV programme, and our visitor stated: ‘the girl was a Down’s’.
They’ve used this phrase before, and in the past I’ve tactfully suggested that the phrase ‘girl/boy/person with Down’s Syndrome’ would be better. I said this again, but instead of ignoring me as usual, our visitor snarled ‘It’s OK because I meant no offence.’ I tried explaining why the phrase is offensive, even when no offence is intended. I was told to shut up, in no uncertain terms, by a third party. I tried explaining that adults with Down’s Syndrome, who are perfectly capable of understanding the issue and stating their opinion, have expressed a wish not to be referred to in that way.
‘I don’t care what anybody else thinks,’ our visitor said, ‘it’s what I’ve always said.’ Then they pointed at Freddie and said: ‘He will always be a Down’s boy to me!’
How I bit back my instinctive response to this I do not know. It was reprimanded for ‘going totally over the top’, it was ‘political correctness gone mad’. When I pointed out that ‘political correctness’ is an issue of basic respect for other human beings, I was dismissed as being ridiculous. Apparently Disability civil rights isn’t even a thing.
Later, after our visitor had gone, and things had calmed down, it was conceded that I had been substantially correct in what I had said, but that I still should have kept my mouth shut and let it go. Why? Because I had caused a lot of unnecessary upset and hurt feelings. I hadn’t been ‘nice’. I went to bed wondering ‘what about my feelings which have been persistently ignored? Why are some people’s opinions and feelings given priority over others, even when they’re acknowledged to be in the wrong?
I know — First World Problems. I should probably shut up about it.
But when all is said and done, I’m not sure I’m sorry that I’m a Nasty Woman. I think I would rather be nasty, and speak up when I think something is wrong, than be one of the ‘nice’ people who keeps quiet and meekly ‘lets it go’.
Half term has come and gone. I’m not going to pretend that I’ve just about survived, and am now counting the minutes until they go back to school. I’ve never felt that way about the holidays, and after twenty years as a parent, I feel that way even less. You see, I now know from experience that one day your children grow up and fly the nest, and then you don’t get to see them for weeks and weeks at a time. And then you miss them like hell. That, without doubt, has been the hardest part of parenting for me.
After a couple of days away from home I’m usually good and ready to come back to my gingerbread-latte cottage on the edge of the woods (this is no word of a lie – my house really is just five minutes walk away from the enchanted woods at Bradwell, that magically make all the noise from the A500 disappear). But this time I wasn’t – we went to Bath, somewhere I’ve wanted to visit for years, and it was so lovely I could have happily stayed a few more days.
It’s obviously a prosperous and well-heeled place, but unlike some of the prosperous and well-heeled towns of the South-East commuter belt that I have been in, Bath, in the South-West, was very friendly. We were made very welcome (and didn’t get called ‘fucking idiots’ once for the crime of being unfamiliar with the town). Even though when we arrived it transpired that ‘we’ had done something idiotic – and booked a room for one person for three nights, instead of for three people for three nights. The hotel was in the middle of a refurbishment and there were no family rooms available. And there was no lift. This was not a problem for us, but a right pain in the arse for the manger who had to somehow manhandle a truckle bed up two flights of stairs.
Freddie wasn’t keen on the idea of spending three days in a (place called) Bath, to the extent that we had to write ‘Somerset’ on his schedule, but once we set off (for Somerset) he was as good as gold. I mean, really, really good – even by ‘typical kid’ standards. I don’t compare him to other eight year olds – he’s more like four (ish). And, of course, he has a degree of learning disability, and a profound preference for routine and familiarity. All this considered I’m really impressed with how well he behaved. We had only a little minor resistance to the rituals of getting washed and dressed, even though this is very often a major bone of contention at home; and a couple of incidents of spitting out food that offended him in some way (though it goes against good manners, this is a perfectly natural reaction to having something in your mouth that tastes or feels unpleasant – I just need to work with him on finding a more acceptable way of dealing with this situation).
Having inadvertently gone to see the ‘Peppa Pig Cinema Experience’ last Saturday, he was quite happy to go for a ride on an open-topped bus (and if he was disappointed that the queen wasn’t driving he didn’t say). He got a bit fidgety, but you’d expect that of a small child. He did quite a bit of ‘self-talking’, something he does a lot of and which borders on echolalia at times, but everyone was busy listening to the (very entertaining) tour guide through headphones, so I don’t think it was noticed. I was surprised to find that several days later Freddie remembered that the guide had used my head to demonstrate a Georgian nit-scratcher, and did his best to tell his Nana.
At the Roman Baths we debated trying to pass him off as an under-five – we were using the major buggy as his latest pair of DAFOs were rubbing his insteps, making him reluctant to walk – but since he knows very well that he is eight, and is perfectly capable of saying so to anyone who asks, we decided not to risk it.
When Daddy asked the young man at the desk if we would have to leave the buggy there, he said:
‘It looks to me like your child uses a wheelchair. Does this indicate that there is some kind of diagnosis or difficulty?’ When we told him Freddie has Down’s and why we sometimes need to use the buggy, he told us that Freddie was entitled to a concessionary rate, and that a carer could accompany him for free. He then pointed out the locations of all the lifts on our little map, and attached a key for the accessible toilet to our audio guide gadget. If only everywhere was so helpful.
‘Lady Flavia’ and her, sadly, nameless slave noticed Freddie’s lamb skin buggy liner and pointed out that it is an aid to comfort that has been in use across the millennia – they were using the very same things to cushion themselves from the cold stone wall. They stayed hilariously in character no matter what you said to them.
I was almost disappointed that Freddie didn’t shout ‘buttocks!’ when he saw the naked Roman bathers (ladies only) projected onto the ruins of the Calderium. It would not have required any explanation, unlike the ‘dozy tit!’ incident in the local museum. We have since learnt not to describe his sister’s bedroom as looking like ‘a bombs hit it’.
All-in-all it was a very ‘grown-up’ break even though Freddie was with us. We even managed a swift half in a little pub one afternoon – Freddie sat quite happily in a big leather armchair, reading beer mats and arranging them in patterns on the table while we enjoyed a glass of craft ale (just the one, mind you, before anyone gets their knickers in a twist and starts speed-dialling social services). Because he was so good we took him to his favoutite fast-food place after, and then it was our turn to amuse ourselves while he enjoyed a treat. Our lives may be different to our friends’ lives in some ways, but I can’t honestly say I feel that we miss out on much.
So, that was half-term Odd Sock style. Could be worse, could definitely be worse. And if Freddie took nothing else away from our trip, he knows what a Georgian nit-scratcher was used for.