The Parody of Politics

As autumn draws in, there’s a generalised darkened mood over in these parts. I am, as some on Twitter would describe me a “liberal lefty”, although I prefer to think of myself as a humanist. I have retained the idealistic notion of my youth that a person is still a person no matter what their colour, gender, birth place, sexual orientation, or ability. It was one of the “British values” I was brought up with where community was celebrated. 

And now? In the UK we have a Prime Minister who got the job by default after all other candidates dropped out (albeit, she may well have been the lesser of a number of evils) who is forging ahead with a policy that she campaigned against with such zest that it is possible to imagine that she is doing it as some bizarre punishment to those who voted to leave the EU. Claims of making everything fairer come across like Goldilocks talking to what appears to be grandma, but in this scenario the woodcutter is too busy being bludgeoned by other woodcutters to burst in and save you. Our opposition party should just be ashamed of themselves. Politics is about representing the people, not fighting for top positions. They have a leader with an idealistic vision with the potential to inspire a whole generation to become politically engaged. The Labour party has in its power the chance to have its Obama moment. 

Politics in the UK is rather like the weeping angels scene in Dr Who: it’s OK whilst you have your eyes open, but blink & they’ll bite your face off.

The US is a whole other kettle of eyebrow raising fish. There are parts of the US that make me pleased to be alive – tales from The Tree house Guy who’s entire purpose on this planet is to make people happy is my secret delight right now. On the days when the kids are with Mr Geek’s parents, when I get home from work I sit and watch this with my Dad & all is right with the world. And that conversation always goes:

Dad “I’d love to do that”

Me “Yeah. You’d be amazing at building that stuff. It’s a shame we’re not over there with the space & planning laws. You could never do that here.”

Dad “But it’s not a good place to be really”

Both sigh.

Either one “Have you seen/heard/read the latest Trump fiasco?”

For two people with such wildly differing political allegiances, we agree that Trump is beyond a nightmare and fear for the wider world if he gets elected. Thankfully, that’s looking less likely, but I’m baffled after the past month how anyone would consider him fit to hold a sharp knife, let alone the post of president of the US. I’ll address the elephant in the room- I’m not wholly keen on Clinton either, but let’s face it, she’s less likely to push the big red button because someone hurt her feelings on Twitter.

I had a whole other tangent planned after reading this report on the policies, but they rather speak for themselves.

Instead, for now, I will leave this imploring note to anyone unsure which way to vote. During the campaigning here, the leave campaign used the phrase Make Britain Great again (sound familiar? Although it makes more sense here as Great Britain is our official title). A fraction over half of the voters believed this, and despite not yet leaving, we have seen a spike in violent hate crime and our currency is at its lowest point in living memory having lost a fifth of its value. Food prices are going up & wages are already being squeezed with major companies moving elsewhere. People who were born as Europeans face having that removed from them & just being British. Anyone who complains is labelled a “bremoaner” and told to suck it up. Oh and our political parties are too busy infighting to actually function as a parliment. This is a tiny taster of what it might be like to have to live with that kind of decision.

Officially Funny. Or am I?

Soooooo… guess who got a nomination for a blog award for being a source of amusement?

The health blogger awards are quite big in my twitterssphere with many of my friends online sharing similar experiences of trying to quite literally hold it together and wobble through life. So, yeah, even being on the list is quite awesome – but winners are picked on endorsements.

Whether you read my blog to laugh at or with me, or if by some streak of luck I’ve managed to help in any way, I’d really appreciate you clicking the link & pressing the big purple “endorse” button to validate my online existence.
Hey, you never know, you might be able to say “yeah, I knew her before she was huge”…. because in the words of The Brain “We’re going to take over the world”.

Clearly feel free to spread the link far & wide 😉


A Moan At @DavidLloydUK About #Equality & #Accessibility

So, here’s a little email that I sent to my local David Lloyd leisure club after being told that the accessible access gate isn’t faulty, instead they’ve disconnected it. Why post the email online? Well, mainly because when verbally complaining, staff attempted the “think of the children” emotional line with me because unattended children had used the gate to leave the club. I have kids – I rather hold that it’s my responsibility to make sure that they behave. (Give it a few years when they’re teens, that comment may come back to haunt me). The next reason almost had me speechless. Almost. 

I shall post their reply once received…

Dear Sirs,

The Disability Discrimination Act (1995) states that it is unlawful for a service provider, without lawful justification, to treat a person who is disabled less favourably than other people for a reason related to his or her disability. Less favourable treatment might occur if a disabled person is refused a service that others are receiving, or is provided with a service of a poorer quality than that which others are receiving.

Able bodied members of the David Lloyd club in Worthing may access the club via an NFC turnstile system which automatically grants access. Previously, this was the same for the accessible gate for disabled & pushchair users. This is no longer the case.

I am a full time wheelchair user and currently in order to enter or leave the building, I am required to verbally attract a member of staff at reception who then must press a button to open the gate & let me through. Not only is this often not appropriate as other members quite rightly require the receptionists’ attention, but doing so draws attention to my disability and makes me disinclined to make full use of the club. The very fact that I am not able to make use of the specifically installed disabled access gate without staff assistance because it has been disconnected from the NFC pad contravenes the above Act as a poorer quality of service is being provided specifically because of my physical disability. 

On a number of occasions I have requested that the disabled access gate be reconnected to the NFC card system as above and my request has been declined. Today, I spoke to your Sales Manager of the Worthing club at which we hold a full family membership. Upon requesting a date when the gate would be fixed, I was informed that it would “never be reconnected”. The reasons stated for this were that other members had been attempting to let non members into the club, that thefts had occurred, and that children had used the gate to leave the club. Based upon the legislation above, I will address each of these below.

On the matter of members allowing non-members into the club, this is surely a matter of insisting that all members use the turnstile gates unless they are pushing a pram or have a physical need to use the gate. This onus is on the club staff. It is not acceptable to remove equity of service to disabled club members where a reasonable alternative is available, albeit not as easy to implement. 

Where theft was used as an excuse to remove the equality of service, even if it was proved that thefts were directly linked to non-members, again it is not acceptable to provide poorer services to those with a disability when a reasonable solution would be to use the turnstiles as above and expand cctv coverage.

Finally, to address the matter of children using the gate to ‘escape’, with the exit turnstiles entirely open to exactly the same this is essentially a non-argument as these have not been closed off in any way. However, to give it consideration, across the rest of the club parents are reminded that they are responsible for the behaviour of their children. I am baffled as to why this would not apply to the front doors.

I would therefore appreciate your response as to how you intend to ensure that equal access to the club’s facilities will be provided for all members with reference to the Equality Act above. 


Mrs B

Blog notes:

Now for you who are saying it’s just a door, I know. But actually it’s more than that. It’s a general attitude that people with disabilities shouldn’t complain & just be grateful that something is provided. Or that there are fewer of us, so the majority is more important. Conversely, there might be more if they could get in without being highlighted as ‘other’.

And for those who I can hear audibly tutting because the person with disabilities dares to be a member of a decent health club. 1 – it’s none of your business. 2 – I work full time, so any stereotype of me using taxpayers money to swan about can be put to bed. 3 – and even if I wasn’t working, my club membership allows me to keep up hydrotherapy in a warm pool which reduces my need to use the NHS pool (at real expense) and subsequently other NHS services as physiotherapy keeps me as good as it gets. And urgh that I feel I need to justify myself.

Edit – their initial response. Which I feel just repeats the reasons I have listed. I’d be interested in your thoughts.

Good Afternoon Holly,

Thank you for your recent email regarding the use of the gate at Reception.

Our Members requirements are highly important to us and we aim to provide you with the best service and facilities that we can.

The Club chose to remove the card reader at the gate approximately 4 years ago for the reasons more fully explained below:

1. Members were taking the easy route and not swiping their card
2. Non members had gained access
3. There was never a card reader to exit the Club – Reception still needed to open for families with push chairs, Members who use a trolley style sports bag as well as for our disabled Members

With regard to health and safety, we also had to look at the fact that if an exit card reader were to be provided, kids could exit the club without parents knowing.

However, with all of this in mind we want you to feel comfortable and happy when using the Club therefore your points have been raised by [redacted], General Manager to the Team here at Head Office.

Currently, there is a Team here at Head Office reviewing card readers and service issues in our Clubs therefore please note that this is all under review.

Personally, I completely understand why you feel this way as I would perhaps feel the same if I had to keep getting the attention of a Team Member every time I wanted to enter or leave the Club.
However, I also do understand why for health and safety reasons we have taken the reader away.

I would like to thank you for your email and would like to assure you that [redacted] will be speaking with the Reception Team to ensure that for now (until we may add the card reader again) they are vigilant and quick to open the gate when necessary.

Best wishes,
Member Communications Executive

Dear UCLH – let’s talk Communication Skills

Dear UCLH,

Specifically, the neurology team. Now we’re all professionals so should be used to peer review. So here’s a peer review based upon my experience with you today.

Before we start, it’s prudent to note that those with Ehlers Danlos Syndrome often have difficulty with adrenal control. This would explain why I am frantically typing this at 1am despite managing fewer than 4 hours sleep the previous night. My anxiety levels peaked today causing a heightened state of fight or flight. Those anxiety levels could easily have been managed had communication with me and more importantly between departments been clear.

What Went Well: 

The appointment letter was clear & concise and received well within the given timescale. Upon requesting a change of dates due to childcare commitments, your administration team were extremely accommodating and did their best to inform me as best possible in terms of available times due to the required 2.5 hour commute to you (based on good traffic). Alternative dates were agreed, arrangements and payments were made for parking as we were not given details of the hotel (see below), congestion charge was duly paid to avoid the issue of trains & chronic pain.

The junior doctor who saw me (albeit for a reason not made clear to me) was lovely. She took the time to listen to me and treated me with respect & intellectual parity.

I regret this section is not longer.

Even Better If:

The time leading up to my appointment was unduly stressful due to the lack of detail provided regarding my planned three day stay at UCLH. The letter stated what tests may be performed and that a patient hotel had been booked. This identified neither the specific hotel, nor the times of the tests, in fact the letter states that details were to be given upon arrival. With my husband having planned to work from his London office over the three days, both of these pieces of information were required, but not provided, even upon arrival. In contrast, we were treated as a nuisance that should have been more aware of the planned procedures. I accept that I thrive on lists & feel far more comfortable when I am of an exact itinerary, however much of this is based upon mobility needs and being away from home, these are often not met. 

The first test was in fact a 24 hour blood pressure monitor & I was asked if my BP was usually so high. No, it’s usually quite low, however I was in such a state by that point that I was suffering with palpitations & chest pain. This was to continue to heighten throughout my stay & accumulate into the first panic attack in my adult life.

As highlighted above, your junior doctor acted with great professionalism when faced with an overly anxious patient who wasn’t fully aware of why they were seeing get this particular doctor (the feeling was that they had been asked to see me to buy some time to sort out the administrative mess as no real medical conversation took place). Unfortunately, the same cannot be said for other staff.

When addressing a person with disabilities, it is polite to address them directly. Only twice have I ever had to make this point vocally and directly to someone who had not taken the hint. Today was that second time with a staff nurse in your day care unit manning the nurses station.

In order to correctly describe using P-E-E (point, explain, example), let me expand:
I was not spoken directly to as part of my care in the hospital by your staff nurse in charge of the nurses station. The nurse repeatedly refused to speak to me directly, instead asking the on duty nursing assistant to relay a message to me despite me directing my question to her and all three of us being within a few square feet of each other. For example, I asked what tests were to be performed today. Your staff nurse appeared disgruntled to be disturbed by a patient & directed her response to the nursing assistant with “tell her…”. 

This is not only highly unprofessional, but incredibly rude. A wheelchair user u just that; they use a wheelchair, there need not be any mental impairment. This happened on multiple occasions.even if the person with disabilities is not able to answer for themselves, talking over them as if they are not there is inappropriate behaviour and requires addressing.

Returning to the first point regarding provision of information, the key point of mobility, specifically being a wheelchair user was omitted from the referral to the Day Care unit. The referring consultant failed to tick the box identifying that I am a wheelchair user. Because of this, the tests were not set up to be accessible and the person setting up my blood pressure monitor voiced concerns that the tilt table would not be suitable as I cannot stand. Upon returning to the day care unit, my husband phoned & informed me that the hotel room that had been booked for us was not accessible. In fact, he had taken my small manual chair into the room & couldn’t get it past the bed let alone into the bathroom. It was now 4pm and the hotel were unable to move us into an accessible room. A message was left with the administration team to try to move us to another hotel.

By this point, I had neither eaten nor drunk anything since 6am and had not had access to my standard painkillers. I was exhausted & in considerable pain. My ‘ambulatory tests’ had so far not allowed me to leave the hospital and we still had no indication of where we would be staying. Instead we were ushered into a room that appeared to be storing drip stands and offered supper. I was far too distressed to eat and felt that no one was listening to my concerns.

At this point we called time of the whole experience and stated that we were going home. The nurse who would previously not speak to me directly, told my husband “when we can’t find you a hotel, then you can leave “. I’m afraid that was the final straw. We removed the monitor, placed it on the nurses station and left. These tests ran the risk of exacerbating my symptoms & potentially inducing fainting. I was not willing to place my health in the hands of people who couldn’t arrange such basic things as accessibility and showed absolutely no compassion for someone who was exhausted, thirsty, & highly distressed.

All of this wasted time and effort could be easily solved in one of two ways. An additional letter to the patient with an itinerary including the name & room type that has been booked. This simple mail merge document plus a postage stamp could have highlighted almost all of the issues encountered today with the ability to solve them well in advance of the day of testing. An even cheaper alternative is to create an email mail merge – this saving postage, paper, even time stuffing the envelope.

Simple forethought, communication, and planning.

Call me what you like, I can’t hear you!

Ehlers Danlos is the Syndrome that just keeps on giving. Today I had the joys of having a tuning forks placed on odd parts of my head. No, this wasn’t some strange hippy healing ceremony, but a real life scientific hearing test.

My doctor bashed it against her desk then placed it on various parts of my skull. Everyone else could hear it except me. Seriously, you heard that? Shit.

Having checked her unusual methods on Dr Google, this was to see the type of hearing loss I have. It is actually a thing that rules out my sinuses or ear canal causing the issue.

I’d suffered a bit of hearing loss after having meningitis in 2008, but not huge volumes or enough to affect my daily life. More recently, I’ve caught myself snapping at the kids to stop mumbling when we’re in the car & insisting that Mr Geek be facing me when I talk to him because he’s talking in the wrong direction… I’m surprised no one had mentioned it TBH. The penny dropped when I went back to school and couldn’t hear the kids when they answer questions in class. I can see their lips move, but all I get is a background hum if there’s other noise. There is ALWAYS other noise in a school & I’m exhausted by lunch from second guessing what they’re saying. But I didn’t really want it to be a thing (I have enough things! I don’t need any more things.). It is apparently quite an obvious thing according to my graphs. See? Graphs. I love a good graph.

The joys of EDS means that the bones in my ears aren’t held together as tightly as they could be. Of all joints, my ears?! FFS. 

So what now? Well, I started off with an off handed tweet.

…and now, I’m trying out some basic hearing aids to see if they help & waiting to see how my referral to Action for Hearing Loss can help. Things may take a little while because I’m under 55 and I’m not meant to lose my hearing before I get old. I am a woman of many talents: I can lose my mobility, consciousness, AND my hearing. Go me.

Teacher in a Wheelchair Series – No 2 – Why Bother?

I’ve lost count of how many times people have asked me how I appear to just carry on despite rapidly falling to pieces. Just as often I look confused at them & say “err I just do. It’s nothing special.”.  Looking at it objectively, actually my ability to hold down a full time job is thanks to a million little tricks and adjustments. This series of blogs is all about unpicking those adjustments & sharing them. Number 1 shared some tricks on making it through the day in one piece, or at least in as few separate pieces as possible. This week, I’m focusing on mental health.

For those who don’t know, I have Ehlers Danlos Syndrome – a genetic condition which affects connective tissues throughout my body making them stretchier than they should be. For me this meant undiagnosed joint pain, weird injuries, & enormous anxiety as a child; later this became chronic pain in my back & gastric issues; finally (and this isn’t my final form) in my mid 30s I dislocate daily, have dysautonomia, intense fatigue, & the joys of adrenal imbalance making me easily “stressy” and unable to sleep at appropriate times.

Life could very easily get very dark; I could easily dwell on the potential of overdoing it & rupturing an important organ; it’s not unusual to do the 2am game of “which body part hurts the most?” – tonight, come on down thoracic vertebrae! We have a winner! ; I am human & the odd week long pity party for one is allowed (and frankly, quite health behaviour when you are faced with similar pain to a broken bone all the time & for the rest of your life). At my PIP interview the assessor took Mr Geek aside and said bluntly “ eye on her, that brave face is going to slip soon & she will crash and burn”. PIP or Personal Independence Payment is the UK disibility benefit to enable us to pay for care & mobility aids. It has a very bad press & the process tested my mental health to the absolute limit. I lucked out with my assessor who was kind & fair and was so jaded by the system that he just asked me straight rather than trying to trip me up. I thought he was being dramatic when he said to look out for my mental health. He wasn’t. 

So here’s some pieces of advice on mental health in the workplace when you have chronic pain. 

1. Every Little Helps

It’s very easy to feel like Sisyphus forever rolling that boulder up a hill & getting nowhere. As teachers, even after years, we have this idea in our heads that we can create a community of well behaved & engaged kids. That ideal will never go.

When I first used my wheelchair at school, I was scared that it would impact on my authority and the kids wouldn’t behave. Quite the opposite. It’s allowed me to be softer with them because I’m in less pain, so have more patience, and they copy my more happy style.

It’s not all sunshine & rainbows though. This week I’ve encountered all sorts and it’s worn me down. We’ve had uniform “adjustments”, monosyllabic grunting  (that drives me up the wall), swearing, use of the words “retard” “gender bender” “gay” “mong” (can you say detention with an essay researching the history of why that is offensive?), graffiti, large items thrown through windows, parents complaining that I’m horrible. I’m painting an awful picture, but this is not business as usual. 

I work in an outstanding school. Not because Ofsted say so, but because it’s a place I want to go to. I gladly increase my pain levels to spend time with the kids & my colleagues. And you can bet any amount of money that each of those issues will be dealt with in a style similar to Thor’s Hammer.

Yes, I’m sick to the back teeth of kids talking to me like something on their shoe, but what they don’t realise is that I’m grittier than them. They will pass this course if I have to drag them kicking & screaming. I secretly like them. Even when they’re making my life hellish.

And that’s my secret weapon. They don’t need to like me, they need to know I have their best interests at heart. They initially think I’m evil. I set all this homework and demand proof that they’ve revised. Then had the audacity to set a test for year 11 on Tuesday. They got their results today & the majority did wonderfully. I gave them proof that their hard work paid off. I won.

2. It’s not personal

Meet the teenager who greets you with “let me sing you the song of my people: that teacher hates me”. The song translates to a number of things:

  • “that teacher set me work that I don’t immediately understand and they won’t do it for me”
  • “That teacher won’t let me sit with my friends and chat”
  • “That teacher doesn’t understand why I’m struggling in class”

In the 3rd instance, yes, we’re in the wrong. And we are not infallible and do miss things. But when those complaints come in because you set high expectations & push for independent thought  (and they will), it’s not personal. Not for you as the teacher. It’s hard for children (and nd adults) to adjust from being spoon-fed answers to being investigators. It’s natural to dislike the person who is pushing you out of your comfort zone. I hated my programming teacher. As he strode around the classroom proclaiming we were all useless & a waste of his precious time so no he wouldn’t lower himself to giving us the answer! We resolved to make him look stupid by proving him wrong and aceing the module. We were played. Looking back, he was one of the best teachers I’ve ever had.

I’m not suggesting his style of teaching. But be firm. Follow your behaviour guidelines. Write home. Know that you are the target for their fear of failure & self doubt.  And by knowing that, you also know it’s not as personal as there words suggest.

3. Cake Monday

Make time for your colleagues. They are your support network. This year is arrived on our first day back with a home baked black forest cake and declared Monday breaktimes “Cake Monday” where we all stop, Drink tea, eat cake, and most importantly talk about us (not work, but what’s going on with our lives). That 20 minutes each week allows us to touch base & gauge if anyone is wobbly. Case in point being my wobble over going to hospital in October – I talked about my fears & whilst they can’t fix it, they are keeping it low key with questions about it banned unless I bring it up.

4. Mark your work!

Err how is this good for mental health exactly? Well, set a routine with books. Collect then in each week & leave a minimum of one positive comment in there. Where they need to improve, ask a question instead of telling them.

When you write down positive things about your class, you feel more positive towards them. This is especially helpful for new classes, or ones you find challenging.

My favourite right now is to buy packs of DC & Marvel stickers which go on the cover of their books if they show effort or grit or self control. These also equate to housepoints, but they love my silly comments of “super effort” or my personal favourite “incredible homework ” accompanied by a sticker of the hulk.

4. Ask for help

Do as I say, not what I do. I am so bad at this & am paying the price. My job this weekend whilst away is to put together a list of tasks that are causing me pain, or issues at work.the reason being so I can propose a change in my support from Access to Work. I’ve reached a stage where I’m aware that I’m overstretching my physical capabilities and need a support worker in some capacity. Travel in a converted van with my wheelchair strapped down is painful & noisy to the point of tinnitus.

As part of this, I used an accelerometer on my phone to measure some of the bumps over my 30 minute journey into work. These show a reading in m/s2 (meters per second squared)

Remembering that travelling in a wheelchair means you are sat bold upright thus placing the ptessure of any bumps directly onto the spine: at it’s highest reading, this was a 3g pressure downwards. That’s on a par with a roller coaster. This could explain why I start each morning with tea & painkillers.

This kind of data will help me to legitimately ask for help & not be seen as moaning. It’s unlikely that’s they would, but I’m my head I’m biting the hand that feeds me.

So, a bit of a long rambley post which I guess is fitting for looking after your mental health when you’re dealing with life & chronic pain. 

Until next time xx