When The Going Gets Tough, The Tough go and have a little cry in the corner

I don’t often blog about the reality of teaching. It’s what one would describe as a CLM (career limiting move). But despite that, here I go nonetheless. Mainly because I need some sleep which means this scenario rolling around in my head needs to be fed to the ether and go away.

I profess about being fine and dandy in my wheelchair. And to a degree I am. It’s my safety net, my means of mobility, and a damned fine piece of equipment. It’s also a bit of a prison. It makes me physically lower than any child I teach who stands up. It makes me feel vulnerable…. And like hyenas, kids in senior school can smell the fear of a teacher.

This particular class is year 8 (that’s 7th grade in the US), so one of the youngest  years in the school. I’d had two hours of incredible lively and productive lessons with them where they are creating animated videos about how words and images are stored as binary. The kids were lapping it up and I was throwing house points about like it was Hogwarts.

Then it changed. My classes have a seating plan so I know who sits where and I can manage behaviour. These two particular boys were not going near each other (a few weeks back  I’d already had to put myself physically between them as they went nose to nose, and that was going to happen again over my dead body). So anyway, my classroom, my rules.

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Or not apparently. At age 12, we deem it acceptable to shout across the room “I’m not moving, what are you going to do about it?”; at age 12, we deem it acceptable to square up to a female teacher with clenched fists; at age bloody 12, we deem it acceptable to be physically threatening towards a member of staff and then verbally threaten them. What a charmer!

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Because of the physical surroundings & availability of staff at that time, I had to take a decision over whether I backed down and lost authority for the rest of the year with them, or stood my ground and face what I perceived to be the very real possibility of being physically assaulted. (I’ve been working with volatile kids for long enough to tell which ones are mouth & no trousers and which are ready to swing). I trusted my gut on this and ditched any respect – this was the first time since I left youth offending that I’ve felt genuinely concerned for my physical safety. My decision was based very much on the images in my head of the level of damage that child could do. If standing up can take out a hip, what would a punch thrown in anger do? I certainly don’t have the speed or mobility to duck.

And so here I am at nearing 1am with the scenario rolling around in my head.

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Legally & contractually I cannot refuse to teach this child. That’s not the way through this anyway. There is an inception style level of issues that this has raised for me.

Top level: What string of events has led this child to think that it’s acceptable to be physically threatening in order to get his way? I’m angry at myself for backing down as any threat I make now is useless (I threatened management, but they never came).

Dig deeper: What have I missed that could give me the key into a positive dialogue? What if that had been another student he tried to intimate?

Dig deeper: I allowed myself to be intimidated by a 12 year old. And the class saw. Most are just used to him & roll their eyes – how is that fair on them? What if we’re not seeing this happen to others? If I was scared, how does a tiny year 7 feel?

Dig deeper: is this about one child kicking off, or a deeper fear that I don’t have the same authority that I had as an able bodied teacher? Without the same mobility or ability to physically defend myself, should I be teaching?

And there’s the big question. This year I have seen a marked increase in aggressive behaviour, but also a marked decrease in support from parents (gone are the days of a phonecall home resulting in punishment – it’s now more likely that they’ll be a complaint about you picking on their darling little thug
Before you grab your pitchforks, 90% of the kids we teach are amazing. They shine. I love spending my days with them, but that 10% is killing your child’s chances of getting the new, harder levels expected because of all the disruption. If your child is that 10%, I’m here to help you, but if you fight me as much as your child does, the overseas job sounds much rosier, as does developing that app.). If there are not systems in place, not just in school, but at home as well, to demand a level of respect for those adults in charge, is teaching a career for someone with a physical disability? In fact, is teaching something anyone would want to do?

Edit: this took me a few days to post as it shook me. I’m still questioning my personal safety, but moreso my competence as a teacher, because it’s what we do as teachers…. WWW & EBI (what went well & even better if)

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It’s Happening & We Need Your Help!

The last week has been a bit crazy, but it looks like we climbed the ladder of this app idea and instead of slinking back down like scaredy cats, we’ve thrown ourselves down the deathslide of startup business and friction burns are in the not to distant future!

But we need a bit of help from you lovely people….

I know surveys are boring, but if you have a few minutes could you answer a few questions to help us get our heads around the kinds of things you guys need, or share this, or tweet a link to the form for other chronic illness people out there?

https://docs.google.com/forms/d/1QMIsaZHbK6ysVtMAcCSy5sfjqAsNVLQ4lGVDqrFNBqQ/viewform

Or use some other kind of social media that I’m way too old and boring to understand? Xxx

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As always, Nice to have you here.

The Zebra Stole My Spoons

There’s this lady I know who has inspired me to be a bit more kickass than the boys despite being in a male dominated industry. There aren’t many people who can keep a bunch of nerds in check and stop the regular as clockwork Creative Tantrums and not lose their mind.

Anyway, not only can she corral the nerds, but she’s also a fabulous illustrator and has created these bad boys for our Expect Zebras app. We’re so drawn to the second one and his cheeky face, but the first one has a simplicity that would be easy to work with and reminds me of a sock toy. Uuugh! What do you think?

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I can’t wait to see one of these guys on all our stuff. I never expected these Zebras – what a lovely surprise!

It’s OK To Want To Feel Attractive

Chronic illness comes with a range of symptoms; pain to hair loss, muscle weakness to incapacity, none of it is particularly fun. We have a whole host of doctors, specialists, and medical professionals trying to make us better, or at the very least alleviate our symptoms to the best of their abilities.

Over time, we become a medical file. Because, you’re primary aim is to get better when you’re ill. Isn’t it? All those drugs are helping, despite the side effects that make you gain weight, make you lose weight, make you nauseous, make your hair fall out, make you exhausted… It’s worth it?

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Sometimes no. Actually, sometimes feeling normal is your primary aim. Sometimes feeling attractive is your primary aim. Sometimes just not being defined by this bloody illness is the ultimate aim.

Some days, getting “better” is more for other people than it is for us.

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The bit that is for us rather than other people is eating that fully gluten cake because, fuck it. It’s wrapping our hair in a million scarves to feel attractive. It’s handing you the oil and asking you to rub the sore bits (for reference, that’s all the bits). It’s you telling me you’re good with just cuddling. Possibly forever. It’s also the understanding nod when I’m snappy because I’m sick to death of my body not working and I’m just raging at the world.

Being the corpse bride isn’t the most fun experience in the world, but it’s actually OK to have a temper tantrum about it. Enjoy the things that make you feel human. Just don’t forget to look after yourself too xx

Brexit – A Kids Breakfast or An EU Referendum

To quote the words of a friend, a Brexit is not in fact a toddler’s mispronunciation of breakfast, but the possible exit of the UK from the EU based on the voting of the masses. It’s now been officially announced that the vote will take place in June and will likely be used as a fabulous shiny distraction from the crappy things the current government are doing to the more vulnerable. (Cue onslaught on “liberal leftie” comments below).

I’m not really one to take propaganda at face value, so decided to look at the reasons for and against a Brexit on a personal level … Nope, still sounds like a toddler breakfast…

One major factor in my life right now is my physical disability. I make no secret that I am a wheelchair user and despite a chronic pain condition am also a full time member of the workforce. I Googled EU benefits for disabled (looking for the dictionary definition rather than the monetary kind) and found the European Commission page on Disabled benefits determined by the European Human Rights Act.

Its objectives are pursued by actions in eight priority areas:

1. Accessibility : make goods and services accessible to people with disabilities and promote the market of assistive devices.
So, without this protection the UK could make accessibility an opt in feature. It’s already not great in the UK and because it’s costly this objective could impact greatly on the ability of people with physical disabilities to participate in daily life. Off the top of my head, this could affect the insistance to provide ramps, parking spaces or hearing loops in the effort to save some money.

2. Participation : ensure that people with disabilities enjoy all benefits of EU citizenship; remove barriers to equal participation in public life and leisure activities; promote the provision of quality community-based services.
This could be interpreted in many ways. Could this mean that councils might not be forced to provide adult social services? Buses with ramps? Airport assistance? It’s all costly & with a Government that sees it’s current disability assessment process as fair, they could just as easily see working hard to provide your own equipment as fair.

3. Equality : combat discrimination based on disability and promote equal opportunities.
It’s already hard enough to arrive at a job interview with an obvious disability. The removal of this could allow employers to not interview, or just fire you once a disability is identified. My employer has been incredible, but I know that I am already very lucky even with this in place.
Discrimination can however be seen where airport staff won’t address you, or staff sigh and grumble that “it’s just a few steps”.

4. Employment : raise significantly the share of persons with disabilities working in the open labour market. They represent one-sixth of the EU’s overall working-age population, but their employment rate is comparatively low.
Right now, the reason I am able to continue working is down to the assistance I receive from Access To Work who co-fund a wheelchair accessible taxi, and perform an accessibility review every few years. They give a list of devices required to help me perform my role in the best way I can (such as trackball mice, or movable armrests). Without this help, I couldn’t continue with my role – with it, it’s hard work but the support is physical and mental.

5. Education and training : promote inclusive education and lifelong learning for students and pupils with disabilities. Equal access to quality education and lifelong learning enable disabled people to participate fully in society and improve their quality of life. The European Commission has launched several educational initiatives for disabled people. These include the European Agency for Development in Special Needs Education as well as a specific study group on disability and lifelong learning.
My CPD must be accessible. This also comes in the form of providing text to speech so that I can listen to notes when fatigue hits rather than reading through overstrained and bloodshot eyes.

6. Social protection : promote decent living conditions, combat poverty and social exclusion.
There’s enough out there already on the degrading process of applying for PIP, or ESA. As a well educated person with few mental health issues, I can confirm that it was one of the most dehumanising and distressing processes I have encountered. This is a rant for a different post.

7. Health : promote equal access to health services and related facilities.
I rely on the NHS to hold the stupid bendy pieces of me together. Imagine if we could only get treatment for things that were curable in a cost effective way?

8. External action : promote the rights of people with disabilities in the EU enlargement and international development programmes.
When you’re not the cookie cutter model of the “hard working taxpayer”, there’s always going to be a fear of being marginalised. It’s not that far fetched.

Objectives obtained & copied directly from the European Commission Website.

It’s an awful lot of protection that I’m afforded by being a European citizen and yet I can’t find anything to identify how being in the EU makes it worse for those with disabilities.

Clearly, this isn’t the only issue that matters, but it’s a start…

Stop Being Sick, You’re Making People Stressed

I feel like a bloody salmon at the minute. As soon as I get my shit back together and start swimming upstream, I get to the top to either fall back down again or be eaten by an opportunistic bear. I am using everything in my arsenal to hold it together mentally and not have a proper poor me pity party over losing my ability to get out of bed or make my own cup of tea. I’m not one for self pity, or pity of any kind. I find it boring, especially when it’s me that’s doing it.

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Today we travelled back from Ireland – the sum total of 7 hours in planes & automobiles (no trains) and arrived home at 9pm spoonless and close to vomiting from pain.

Some months ago at my PIP interview, the guy who interviewed me turned solemly to Mr Geek and said “Watch her. She’ll put on a brave face then all of a sudden will hit rock bottom. Just watch her mental health.”. We shrugged it off.

Since being diagnosed, I have not mourned the loss of my physical capabilities outwardly. I’ve internalised it and it’s manifested in me not sleeping and I’ve subsequently grinched about it on here, but I’ve just got on with life because that’s what you do. I’ve not given up work, I’ve attempted to continue with life as normal, I’ve played down my pain levels whilst gently introducing everyone else to the idea that they need to live with a disabled person.

Occasionally, I am snappy with Mr Geek because he forgets that I can’t do something, or I ask him to do things for me to maintain this quality of “nothing is wrong” life. He is a good man & I lean on him. If anything, I snap at him to make sure the things that wind up other people in the house are done, or something for the kids. The things I personally want to do come much lower down the list, unless it’s pain related.

This evening, after yet another wonderful experience with people who claim to be accessible, I was not in the mood for a “you’re doing it wrong” conversation.

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But I was treated to one anyway.

I was informed by my Dad that over the past 9 months of my getting ill, Mr Geek’s stress levels haven’t just doubled, or quadrupled, but multiplied infinitely and that that was because of me. He’d “noticed” that I was overly demanding of Mr Geek. The exact phrase used was “I couldn’t put up with what he deals with”.

I explained that it’s not easy to lose your independence & yes I know I snap sometimes, but it’s frustrating when you cant do things you once could. I was cut short and told “that’s not his problem, that’s your problem to deal with”. This was followed by the offer of help from him & my mum to sort out caring for me (having already said, under no circumstances do I want them doing that –  I’d prefer to have an outside carer. ).

Now I know he meant well & has Mr Geek’s state of mind at heart, but that little thread of sanity I’d retained just snapped.

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So let’s all really say what we’re thinking shall we? Whilst we’re goibg for subtlety. You’re meant to get ill, go to the hospital and get treatment then get well again or die. Well, I’m not doing the latter so instead at best I’ve got another good 30 years of being in daily pain with more and more joints popping out and various organs prolapsing, & at worst add in my current GI & dysautonomia issues getting worse. That’s my whole lifetime again without sufficient drugs to mask the various lightening bolts and spasms, or eye-splitting headaches, then the possibility of tubes for food going and and out.

I try not to look at that big picture, because down that road lies maddness and a one way ticket to Switzerland.
This is much more manageable taken one day at a time with future plans being fuzzy in case they need to change. Taking small steps also allows for an inkling of hope that this might get better. One bad day can’t go on forever, or at least that’s my positive hippy dippy thinking.

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I’m aware that this is just another one of those cycles that you go through after becoming ill, but having been raised to not have a healthy outlet for my anger, I get to sweep this under the carpet and trip over the lump.I know that it’s actually OK to rage over the injustice of losing the life that you imagined you were going to have. I also know you get over the raging and become a human being for the other 90% of life. I know that Mr Geek gets it and encourages the blogging because it is fucking infuriating not being able to do up your own arsing bra.

What this doesn’t stop though is my overwhelming urge to go to bed and not bother getting back up. If it’s my problem then I’ll stop trying to make it easier for everyone else and deal with it my way.

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Raindrops on Kittenscl. And mittens on snowflakes?

Dear Mr Geek,
I’d like to write something profound about the rejuvenating qualities of spending time with your best friends.  Certainly calmer and a bit more pragmatic than I was a few days ago.

Due in part to my brain soaking in oramorph, I will stick instead to a Julie Andre’s style list of things that you do. A few of my favourite things if you will…
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Making light of things with blatant innuendo. You see the breast in everyone.

Kneading my shoulders. I wind myself up tighter than a tightly wound thing and add to my muscle knots and tension headaches by being Anxiety Girl. You methodically go through and untangle those muscles and manage to calm my nerves at the same time.

Providing food. It sounds simple doesn’t it? But I just wasn’t in the right place to start eating today and the “better” feeling from fasting is alluring. You tempted me with nuts & chocolate until I stopped wearing the retaliation from my intestines for eating.

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Technically, food credits here go to Mr GypsyTree. Oh this was SO good.

Stroking my hair. This one is odd. I don’t like other people seeing the current state of my hair and so it highlights how comfortable I am around Mr & Mrs GypsyTree having unwrapped my scarves this evening. But instead of wanting to hide my hair from you, I like that the hair that is left is kept back as a gift for just you. What this means is when we lay in bed and you stroke my hair, it’s so much more intimate and creates a little bubble around us where everything is OK.

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I’ve felt so unwell this week and I appreciate that you’ve recognised that and adjusted yourself accordingly even though you’ve been stressed out of your mind too. Things always feel much better when we throw poop at it together. We’re a team. And even if I am barely able to string a sentence together, I love you very very much.

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