Spoonless in the South-East

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[If you haven’t come across the Spoon Theory before, click here for a primer!]

I haven’t written since the end of April, which is far too long. I’m sorry. I really wanted to increase the amount I’m blogging (on average once a month), not neglect it again. I have multiple started/sketched out subjects in my drafts, and even more ideas I haven’t even started on.

What’s stopping me? Frankly, I’m just out of batteries. It feels like I’ve had a handful of good days so far this year. Even for me this is especially bad, and it’s only gotten worse in the last few weeks with a huge increase in pain in my neck and hips affecting my sleep. Fatigue, and brainfog, and pain. Not things that are very helpful when you’re trying to hold a train of thought together. As well as useless I feel quite anxious; writing is the one thing I still have of the “other’ me, the me that didn’t see their health washed down the plughole over the course of a few years. I’m scared that if I don’t recover some ground, I’ll have to put the blog on hiatus – and the Patreon with it (after all, people are paying for words and actions).

Not that nothing’s happened at all…. my solicitor is using my negative experiences with the bus company to teach bus drivers what not to do, and I got my Topshop fitting rooms story in the press, even if it didn’t get as much attention (and therefore positive change) as I wanted it to. I just rarely have enough energy at the moment to go beyond the absolutely necessary – which means my twice-weekly therapy is taking up pretty much all my available spoons. I’m still pretty active on Twitter in the meantime, because it’s far less taxing when I don’t have to write more than 280 characters or attempt to stay on topic.

*flops*

 

Diagnostic Curveballs

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Maybe it’s because when I have discussions about diagnoses it’s usually with other members of the chronic illness community, but I’ve been equating diagnosis with answers for a long time. I’m used to posts where people are grateful, relieved to have a diagnosis of a chronic illness. To be honest, so was I – they gave me answers to symptoms that had been plaguing me since childhood. “You have asthma”; Oh, that’s why I can’t breathe deeply without coughing. “You have Ehlers-Danlos Syndrome”; Ah, that would explain the constant pain and loose joints. “You have POTS”; Yeah, I’d figured that one out too due to the tachycardia when I stand up. But not all diagnoses are answers to puzzles, but puzzles themselves – as I am finding out.

Dear body, please stop.

2018 has been a ridiculous ride of hospitals and new things turning up so far, mostly within a 10 week period. With housing stress and overwhelming anxiety being my baseline this isn’t ideal, but I thought I was coping until a week or so ago. Being diagnosed with heart failure at 32 was a bit of a shock but the fog quickly cleared and I realised it didn’t really change anything except how I viewed my body’s need for rest and recovery (in a more sympathetic light, by the way – I struggled before with the psychological need to “shake off” the fatigue, especially when confronted with articles about other EDS patients who ran marathons or “didn’t let their condition stop them”). You can’t really argue with heart failure. Even I, who likes to argue with everything and everyone, am trying my hardest not to argue with it.

Can’t we have a one-in-one-out policy?

Then came the Central Sleep Apnea, which was more of a surprise. I did a sleep study in November and the results were revealed to me earlier this month. I guessed I had some degree of Obstructive Sleep Apnea, and was prepared to be told to lose a little weight, or to see about getting my adenoids out or something but no – it’s my brain failing to do its basic job of keeping me breathing. *facade drops slightly* Stupid body, stupid brain, why is so much going on at once? Oh well, CPAP therapy trial coming up, hopefully that will improve my fatigue by a fraction…

*MARCHING BAND INTERRUPTS TRAIN OF POSITIVITY TO DELIVER MORE TEST RESULTS*

Oh good, more unwanted news. My prolactin levels are approximately 25 times higher than they should be, which was unexpected considering the lack of symptoms (aside from the occasional uh, leaky boob). High prolactin levels can be caused by stress, a side effect of medications (notably older generation anti-psychotics), or a small brain tumour in the pituitary gland called a Prolactinoma. My GP suspects the latter due to the high levels of prolactin, and the fact I don’t take regular prolactin-increasing medications. There will be a scan soon, with an urgent request sent by my GP, then whatever treatment follows. Whatever it is, I need to get my levels down as prolactin levels that high can cause a loss of bone density which I’m already susceptible to. I’m not overly alarmed, but I am weary of my body ramping up its trickery.

And I’m annoyed. Very, very annoyed. It’s just too much now. My diagnosis list reads like someone typed “fatigue” into Google and wrote down all the causes. It’s getting to the point where I’m scared to talk openly about my health because it’s just so ridiculously hyperbolic at the moment and I don’t want to start causing eye-rolls and “oh great, Nina is talking about their health issues again” with every additional, bloody stupid, and unconnected diagnosis. It’s just more questions (“is this obscure co-morbid condition causing Central Sleep Apnea?” “is taking an anti-emetic every week or so enough to ramp up my prolactin levels?”), when what I’m used to getting from a diagnosis is answers. I feel like I need a chart on my wall like in dramas about over-involved investigative journalists, with each condition and symptom connected by coloured yarn, in order to keep track of what’s going on. And this is on top of the ever-present housing stress. No wonder I have trouble getting to sleep.

Thanks for letting me get that off my chest. Normal service will resume soon.

 

Disabled facilities are not storage spaces.

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“Disabled facilities are not storage spaces.”

You’d think the above statement would be obvious. After all, what use is a cubicle or toilet if it can’t be used for its intended purpose? Unfortunately, the answer is often found inside – where these facilities created to enable wheelchair users to try on clothes or use public conveniences are misappropriated as store cupboards.

I cannot tell you the entire range of items that can be found in accessible loos, but to give a brief picture from my own experience: mop buckets and cleaning equipment, excesses of nappy bins, unfolded baby changers, staff members’ bicycles, zimmer frames and wheelchairs belonging to other patrons, and even folded wheelchairs belonging to the venue itself. For a wheelchair user, having the space to enter and safely transfer to the toilet, let alone turn around to exit again without contorting oneself, is paramount. Having the facility stuffed with unnecessary objects and obstacles often prevents wheelchair users from being able to transfer and turn around safely, as well as from accessing the emergency pull cord (which has its own ongoing issues with being cut or tied up). In the worst case scenario, a wheelchair user may find themselves without a toilet they can use while out of the house. We shouldn’t have to pre-check that the toilets are not being used to store things before we choose where to go for supper, on top of checking all the other accessible points that are needed but sadly lacking in so many public places.

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THREE nappy bins (count ’em!) in a shop’s accessible loo, preventing the ability to turn around.

And then there are fitting rooms. What prompted this post was a visit to Topshop the other day, my local branch in the Palace Exchange, Enfield Town. The shopping centre itself is pretty good for access – it’s all on one level, all shops are level access, most shops have lifts if they have more than one floor, and there is an accessible loo that can be accessed by Radar key. I don’t normally try on clothes – it’s less exhausting for me to buy something then try it on at home and return it the next week if it doesn’t fit – but I was having a good day and wasn’t sure which size of the shirt I liked would fit me. I was pleasantly surprised that they’d thought to include a wheelchair accessible fitting room, but less pleasantly surprised by what it was being used for:

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Even the models in their adverts would struggle to squeeze into here.

The staff member monitoring the fitting rooms was very apologetic, and helped me cram my chair into a normal cubicle and pull the curtain around its sticking-out arse (yes my chair has booty). Although I managed to try on the clothes I wanted to in a very small space, I was left feeling that “sorry we’re using the accessible cubicle to store sale rails” wasn’t really good enough. What if someone came in who really needed that larger space? Someone using a larger wheelchair, or who needed someone else to assist them in trying on clothes? Not to mention access to the emergency pull cord….again.

I’ve tweeted to Topshop and haven’t had a reply yet. I’ll keep trying. This brings me onto how to address the misuses and abuses of facilities meant for disabled customers:

COMPLAIN. Complain as loudly and as publicly as you are comfortable with, in person or online. Tell your friends, get the message shared. It is shameful to misuse an accessible space like this, and the abuses of them will only stop when it becomes seen as an unacceptable thing to do. This won’t happen without public pressure from customers both disabled and non-disabled. So, next time you’re in a clothes shop with an accessible fitting room, have a look and see what it’s being used for.

In the meantime, I await a response, any response, from Topshop….

Further Adventures in Bureaucratic Incompetence.

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Will I ever share good news to do with housing? Well, one day I hope to but today is not that day. When you’re dealing with a department as shambolic, uncommunicative and Kafkaesque as the council’s housing department, you have to cross your fingers and pray that all other agencies involved are on the ball. That appears not to have happened.

This afternoon I spent 40 minutes in an airless back office that smelt of feet, waiting for the results of the Great Bureaucratic Incompetence-Off. I knew that the council had sent a form (plus a freepost envelope!) to my GP back in October – I knew this because it had been put into the system shortly before I had an appointment in November, and the GP I saw had told me her colleague would be doing it soon. I also knew that it was now five and a half months later, and I had seen zero progress as far as housing went – but also that sometimes the council needed something akin to 20,000 volts up the arse to do anything with the information they themselves had requested. However, an afternoon at the housing office is only slightly more preferable to one spent having a filling without anaesthetic, and I assumed that finding anything out from the GP’s office would be somewhat easier than dealing with staff at the housing office (you know those characters in videogames who have important things to say to you but you can’t ever work out the right thing to make them say it?). I guess in retrospect 40 minutes in an eau-de-pied office surrounded by broken blood pressure machines was better than [time doesn’t actually exist in a housing office] the alternative.

“There’s a queue, dear”, said the receptionist, when I asked her to look up the letter on the system, and see if anyone had “actioned” it (arrgh, not a verb, I refuse to accept it).
I was aware there was a queue, I had waited in it for 10 minutes, and now I was at the front of it. “Can’t you come back another time?” Mindful of the ‘aggression will not be tolerated’ rules laid out on laminated pages on the counter, I aimed for ‘snippy but polite’ and pointed out that there was always a queue and by the standards of queues I’d been in there, this was quite a mild one. Five minutes later I found myself guided to the back office by the reception manager, and left for 20 minutes or so while she tried to find out some more information. She returned holding the sheaf of printouts that the first receptionist had handed to me 20 minutes ago. No, nothing had been done with the forms since they arrived in October. For over five months I sat at home like a lemon (again!) assuming someone was doing something with the information I had given them (again!) but instead the Thing That Needed Actioning (argh!) was sitting in a to-do pile in another dimension (again!)*. She left again for a while, and came back to offer me an appointment to fill the form out tomorrow morning with, awkwardly, the same GP who told me that her colleague would be doing the form five months ago.

(*) If this sounds depressingly familiar, it’s because it is. From January til June 2017 my housing application for impending homelessness sat in an unattended inbox until my friend (who is a housing support worker, but not for my council) badgered them into finding it and starting the process. So that makes a grand total of 11 and a half months of unnecessary delay out of the 15 months since I submitted my application to the council. Should I have sat around for both delays, waiting for them to get this far without chasing anyone up? Of course not! – and that’s where the paralysing anxiety comes in, and the depression that makes me too miserable to even think about housing, and the fatigue that prevents me from being in any way useful most of my waking hours. Basically, all the things that will go on that medical form tomorrow. It took until today for me to feel okay enough to ask about the letter; it’s nearing a miracle I still have the energy to write about it after.

THIS is why I need an advocate, a support worker, a someone who can do the chasing-up and checking-in. It’s not me trying to shirk responsibility for my own endeavours, but trying to ensure that I don’t fall between the cracks again. Because I have, due to the aforementioned assortment of brain kittens and body woes. When I do speak to people about it, their assumption is often that I’m trying to weasel out of doing my own work; I’m educated, well spoken, on paper I should have my shit together. In reality, I’m holding the cracks together with jam. However, I have a vague plan: tomorrow I see the GP to do the form and at the same time I will ask if she can refer me to somewhere. If I have no luck there, I see my therapist on Thursday. If no luck again, the CAB (so, somewhere around 2019 when I’ve built myself up to it….)

I’d just really love for every step in this torturous process not to come with its own obstacles. NOTHING about the housing process so far has been anything less than frustrating. At this point, “frustrating” would be a vast improvement.

For Valentines Day I got a broken heart.

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Well, I got the answer to why my fatigue has been getting worse and worse even when my pain is manageable, I’m preserving energy by using the powerchair, and my POTS symptoms are relatively well controlled. On Valentines Day I got was a call from my cardiologist. I mentioned being so frustrated with my current level of fatigue, and that I was considering going to a private specialist. “Well, I could refer you”, he said , “but most of the patients I refer there have hypertension due to stress and fatigue due to burnout, they’re working too hard. You’re fatigued because your heart isn’t pumping effectively. Didn’t you get the letter?” (I had not gotten the letter.)
He calmly explained that they’re recently seeing this kind of cardiac fatigue in some patients, but needed to set up a research group in order to work out what’s causing it and how to treat it, if it can be treated it all. He also told me to start taking CoEnzymeQ10 at a very high dose to try and improve fatigue and retain heart function before my next appointment, when we’ll discuss more treatment options for this and the autonomic dysfunction (both very experimental areas at the moment – trust me so be so bloody niche).

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I told my friend about the CO2 problem, and she decided I was a plant. I live on photosynthesis.

The next day it got scary, as the letter arrived. It’s easier to take daunting news when it’s coming from a lovely, cheery consultant on the phone, but there’s nothing comforting or reassuring about a page of test results. I’m in heart failure which is causing abnormally high levels of CO2 in my bloodstream, as ineffective pumping action means it doesn’t leave my body at the normal rate. I’m glad I got the phone call first, because it meant the results were easier to decode and I knew I wasn’t in imminent danger because of my cardiologist’s tone, but my overall feeling throughout the day was still one of being scared and anxious, and to an extent it still is. I’ve never had to try and take in a diagnosis before like this, I’m not used to answers coming with other implications; when I was diagnosed with Ehlers-Danlos Syndrome I already knew something was wrong and finding out what it was and therefore being able to access treatment options was fantastic. Here, I didn’t know anything was wrong other than extreme fatigue, which I’d presumed was connected to the EDS/autonomic borkery; it might still be connected, we’ll see what the research turns out, although it could take literally years.

Heart failure at 32. Well, I’ve faced tougher things.

Here’s what I’ve learnt in the last day of nail-chewing and sporadic Googling:
Heart failure isn’t necessarily a death sentence, it’s a technical term for when the heart is not pumping effectively – sometimes due to thickened muscle, sometimes due to cardiomyopathy – in my case it’s still a mystery as to what’s causing it, but we know it isn’t any of the usual suspects, and we’re not expecting it to progress quickly.

I think this is going to be one of those “several stages of dealing” things. I’ve felt alienated from my body for the last couple of days, like something about it has fundamentally changed although of course all that’s really changed is what I know about it. Today I’m focussing on what I know:
I know I feel incredibly grateful that back in 2015 my local hospital’s cardiology department referred me to a specialist heart centre because they themselves didn’t know much about autonomic problems. I know I’m not panicking, because my cardiologist isn’t panicking. I know I don’t want to tell my mum. I know what’s wrong now.

ACCESS REVIEW: Victoria Palace Theatre (Hamilton) UPDATED 30/03/2018

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Let me start by assuring you that Hamilton was as astounding as the hype suggests. There is nothing to worry about in terms of the quality of the performance. However, as the theatre has just had a refurbishment, I had higher expectations of the accessibility. I’m going to break it down into sections.

Getting Tickets
I signed up to the pre-sale list as soon as it was announced. Somewhat predictably, I was unable to buy the tickets I needed online (see: the vast majority of times I’ve bought theatre or gig tickets). I was sent to a form to fill out, with assurances that I would be phoned back – with no timespan given. That was worrying to me because I have big phone anxiety, not to mention a variable sleeping pattern, and only turn my phone ringer on when I know I’ll be getting a call. Luckily they called two weeks later when I was in Starbucks playing on my phone. I got the impression that they hadn’t even decided how many wheelchair spaces to have yet.

Entrance
No complaints here. We made ourselves known to the staff who were managing the queue, and were handed over to the Access Host – and fairly impressed that they had someone who was dedicated to that job. The wheelchair-friendly entrance was around the side, no scary ramps, good sized door.

The Wheelchair Space
Here I encountered problems. The first thing I noticed was that the floor, as is common in theatre stalls near the back, was sloped downwards. While the stalls seating stood upright, my wheelchair tipped downwards to the point where I had to use the tilt-in-space function just to be sitting upright and take pressure off my hips. I’ve been to theatres with sloping floors where a sort of wedge was used to even out the angle for the wheelchair user (after all, not all wheelchairs, manual or electric, have tilt-in-space functions).

The other problem with the wheelchair space was the view. At the Victoria Palace Theatre, the only wheelchair spaces are on either side of Row T, the back row of the stalls. This would have been less of a problem, if not for the significant overhang of the circle balcony (see picture below) which meant we were often unable to see when performers were on the higher levels of the stage. When I posted the picture below on Twitter, multiple people who had also booked a wheelchair space (either side), told me that, like me, they had not been told that the wheelchair space had a restricted view when booking. But, because this is the only wheelchair space available, it seems to be take it or leave it. I did ask the Access Host if this row had the only wheelchair spaces, and she talked to someone more senior and came back with the answer that the council did a health and safety check and told them that the wheelchair space had to be at the back due to fire safety. I took this at face value at first, then remembered that at another theatre I had come in through a corridor, and was still placed halfway down the stalls section. I plan on contacting Delfont Mackintosh, who own the theatre, with my access concerns, and will hopefully be able to verify this.

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Not the best of views.

 

Services
I didn’t go to the bar before the show started, but C tells me that he saw another wheelchair user there. That, and the fact that the Access Host offered to escort us to the bar before the show, makes me believe that there is an accessible route to at least one bar. Something that I would have appreciated was being brought a merchandise catalogue, which I’ve been offered in other theatres. I don’t know if there was a merchandise stand I could have accessed* (my partner, C, saw one that was down some stairs), but in any case being in a throng of people is incredibly stressful and dangerous (for them as well as me!) in a powerchair, and I’d rather order remotely to avoid that.

* Update: I have been told by someone on Twitter who has visited with a wheelchair using friend that there is indeed an accessible route to a merchandise stand.

Toilets
Probably the worst of the “accessible” features. To the theatre staff’s credit, the Access Host came with me in order to keep people to one side while I passed though (the corridor is quite narrow), but when I got to the toilet I found the most face-palm worthy of all errors – a door that opens inwards. I reckon if the door had opened outwards, I would have just about been able to get my powerchair in without it being wedged next to the toilet itself and have had enough room to safely transfer. As it was, because the door was quite wide (which would have otherwise been a good thing), even ramming my chair as close to the toilet bowl as it would go, returning tilt to a fully upright position, and moving the seat back as far forward as possible, the door wouldn’t shut. I had no choice but to leave my powerchair unattended outside, angry with the knowledge than many wheelchair users will not have that option if they need to use the loo. Maybe those who use small self-propelled chairs would be okay, but there wasn’t a lot of space to use the pull down transfer rail that I saw. Oh, and when I got into the theatre, I could see there were two folded transport chairs belonging to the theatre on the inside, further reducing the available space. Again to credit the staff, these were removed after I commented. But overall, not great accessible toilet facilities which many wheelchair users would find troublesome.

I will be working all of these worries into an email to Delfont Mackintosh.

& again, don’t worry, the show itself was awesome 🙂

*Update 09/01 – Someone kindly sent me the theatre’s (out of date) access page which states that there are FOUR wheelchair spaces, and they’re somewhere in the middle, not right at the back. I wonder why they changed this? More for the email… 

*Update 30/03 – Hello again! I’ve had some replies from the operations manager of the theatre, who was very apologetic and impressively keen to rectify the issues I raised. In their response to my email, the manager promised to sort out the levelling of the wheelchair spaces (they now have a wedge that non-tilting wheelchairs can use, which should be offered by the access host on arrival), to instruct staff never to store the theatre’s own wheelchairs in the accessible toilet, and to replace the inwards-opening toilet door with a bi-fold one. All of these things seem to have been done immediately after my email (although I have had reports of wheelchairs stored in the loo again, which I have fed back), and in addition I have been told there are wheelchair spaces available in the stall-level boxes (which have a level floor), bringing the total number of spaces per performance to seven. Thanks to everyone who’s been to the show since who’s shared their experiences with me about the improved access. If you’re going to Hamilton in London soon, and are a wheelchair user or will be using the accessible toilet, please let me know how the access was as I am eager to know how much difference the improvements have made the experience for disabled fans!

The Resolution Solution

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I tend to make the same New Year’s Resolutions each year: read more, write more, do my physio, wear my bruxism mouthguard, be happy with my body shape and size as it is. This year I’ve also resolved to start swimming again (aim for once a month), and see my mum more (again, once a month would be a great increase). I try not to  see them as firm resolutions as much as goals it would be nice to achieve, but even this softening of the term doesn’t stop me sometimes being hard on myself when I don’t manage to keep them up, even though it’s ill health and not laziness or lack of willpower that causes this. Depression stops me enjoying books, which are, when being read, my greatest joy; writing is hard to focus on when fatigued or in pain, or when the brain kittens are playing; the mouthguard hardly got worn at all in the first 10 months of last year thanks to a rogue wisdom tooth.

So, this year I’ve decided that in addition to my standard well-intentioned resolutions, I will add another: I resolve to try my hardest not to be angry with myself when health, physical or mental, prevents me from keeping a New Year’s Resolution, or an appointment, or a social event. All being angry with myself does is encourage me to wallow in self-pity over my shonky collagen and propensity to sadness, and I’m not a fan of self-pity when it comes to things I cannot change, where I cannot turn that self-pity into dogged determination. If I only read 16 books again, as I did last year, so be it – at least I read some books. If I only wear my mouthguard every few nights, that’s better than not at all. One thing I am determined to stick to, though, is the writing. One of the reasons I set up my Patreon page was to give me an impetus to write, if not to a schedule, then at least with greater frequency. But, if  my health gets in the way of even that important goal, then I will try to remember the last and most important resolution for this year.

 

 

It’s just a saga now.

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I’m sorry for the gap between posts. I’ve had a cold and apparently when you’re already chronically  ill, a cold turns into “three weeks of being mostly asleep”. Not that much has happened in terms of housing; the council move at a rate that doesn’t exactly suggest that they work with people in danger of becoming homeless. Also, a couple of weeks ago the Guardian’s Disability Diaries , which I was a contributor to, were published and there’s been a lot of good feedback. I hope it helps in a small way to change public preconceptions about disability of all kinds.

Before I “update” (spoiler: no actual progress) I will share some exciting news. I finally decided to make a Patreon page.  Readers of this blog are, of course, under no obligation to sign up, but this blog is just one small aspect of what I hope to be able to do in terms of disability awareness and activism. Already I’ve reached my first funding goal, which means I’ll be meeting with a designer next week to revamp the style of this blog, ahead of registering a domain name. Fancypants!

So, the housing saga, and it is a saga at this point. It’s almost a year since I was told to find somewhere else to live as soon as possible, and I keep hopping back and forth aimlessly between the council and private rental options. Neither have been productive.
This month I’ve been focussing on the council, as I received a letter last month telling me that the “medical officer” had written to my GP to verify my various health claims (so that I could be referred to the council’s “housing association” partner). First problem – aside from the fact I went through four GPs there in a year due to them all leaving or retiring, my surgery closed down at the start of October after failing its CQC inspection. I had an appointment with the named GP at my new surgery last week to explain my housing needs and she seemed understanding and receptive, though I feel bad asking already-overstretched doctors to do things like this, when I’ve already uploaded reams of medical evidence to the council’s housing denier bot. Second problem – As I learnt in January when my mental health took a nosedive, the hospital mental health team’s notes don’t get copied to the GP’s system, so this sent me into a small tizzy when I realised that a GP would be unable to confirm the mental health history I had outlined to the council. Trying to rectify this was a small saga in itself:

I called the council, on the number at the top of the letter. There was a housing extension there, but as it turns out, the officer was there only for questions about rent. Any other housing queries had to be sent to the Housing Office. No there is no direct number, or email address. No he could not pass a message onto the Medical Officer, because they didn’t work in the same building. So, lacking any other option, I went back to the wretched hive of scum and villainy known as the Enfield Housing Office. “Do you have an appointment?” No, because there is no way to make an appointment. I took a seat as requested, and watched various vulnerable people having their needs denied. Eventually my number was called and I wrote down the information to be passed onto the medical officer. “She’ll call you, wait here and she’ll call you” “Is she not here?” “No, she’s upstairs”
So, I sat in the Housing Office for 90 minutes until someone who couldn’t be bothered to come downstairs and talk to me phoned me instead to verify that yes, someone had passed on the post-it note with the mental health team’s details. How very dehumanising. 

Then, on the 22nd of November, a text from a lettings agency:
“Enfield Homefinders have forwarded your contact details” – without my permission to do this, I might add. They included a link to a property on RightMove. It is not wheelchair accessible. So, the council gave a third party my phone number so they could advertise properties to me, without also passing on my access needs (which go beyond just needing level access). Superb. I was polite in my reply, but made it clear that I didn’t want either of our time being wasted by being offered unsuitable properties. I strongly suspect that this is nearing the extent of what the council will actually do for me, although I’m not aware of what their legal obligation is if they don’t actually have any suitable properties themselves.

 

 

 

Ability Bow – a gym for disabled people in London, hit by Tory cuts.

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The Tories are taking away from disabled people with one hand, and outright stealing with the other. I recently received a message from the user of one depleted service, asking me to spread the word. I recognised it as a gym that I had once been recommended to use myself when I was unable to do my physiotherapy exercises on my own, so I was shocked to hear that many of its services, including the ones I had been recommended, were no longer available.

Ability Bow is located in the heart of East London, and was set up in a disused church after a community campaign in 1998. It accepts both disabled and non-disabled members, with programmes tailored to each person’s ability and goals. Disabled and elderly people are frequently referred from their GP, so that they can benefit from what Ability Bow offers. It’s no surprise that the gym is described as “busy” with the amount it offers, including specialist sessions for stroke patients, people with MS, people with learning disabilities and, still on the website as “starting soon”, a programme for D/deaf and hard of hearing members. From 2006-2016, over £2.3 million was raised so that 3650 disabled members could exercise safely and with supervision  – the gym is wheelchair accessible, with accessible changing rooms, equipment, showers and even a sauna! 

Most of the people we work with have had a life-changing event such as a stroke or spinal injury or the diagnosis of a long-term condition like MS or Parkinson’s Disease. We accept referrals from GPs, physiotherapists and other Health or Social Care professionals and we have no exclusion criteria – we do not turn anyone away no matter how complex their disability making Ability Bow the only service of its kind in London. – from the Ability Bow website

The Ability Bow gym is an active, and beneficial part of both the East London and disability communities. However, in October 2016, due to a lack of adequate government funding, Ability Bow was made to cut half their professional staff and subsequently many of their services. Currently the Ability Bow gym is only open for those who can exercise without close supervision (after their initial supervised introductory sessions), which leaves 60% of their membership, who have been referred from their doctors and need more support or 1:1 sessions, without any gym services at all (the nearest similar service is in Birmingham). This is a huge blow to the regular users, who now have no support to exercise, and also a self-defeating move from the government – the long-term rehabilitation offered by the gym reduced hospital admissions, physiotherapy needed, and amount of medication and care needed in several disabled gym members surveyed. The money saved by cutting the gym services will be added onto the additional cost for the NHS and social services. It’s not just the exercise either – the members no longer catered for are missing out on socialisation, interaction, familiarity; things many severely disabled people lack due to a rotation of unfamiliar carers and lack of support.

The testimonies speak for themselves:

“My daughter uses the gym regularly. She is long term disabled. She no longer gets regular physio. The reason is funding cut. The excuse is that she has the gym to keep her agile. Now the gym is being affected by cuts! What a disgrace. The top priority for funding in the city should be important projects like this!” – Akiva

“My wife is a user of Ability Bow. It is a rehabilitation centre as welll as a gym. My wife was always falling due to her poor balance and mobility limitations. Use of the the specialist/adapted equipment at Ability Bow and the support from staff has helped her build strength and develop confidence which in turn has reduced her falls and visits to A&E. As her carer, Ability Bow helps me to help her, Please save Ability Bow” – Joseph

“I have worked here for the last 7 years and it’s one of only 2 or 3 gyms in the country that caters for people with serious health conditions with specialised equipment.I have loved working at this gym and seeing the life changing impact it has had for clients.” – Andrew

“…my wonderful sister attends the gym and has benefited immensely. The staff and centre do fantastic work helping some of the most vulnerable and often forgotten members of the community. The gym provides a much needed and invaluable service.” – Mary

You can find more testimonies, and information on how to help campaign to restore the gym’s services at the Ability Bow website or on the campaign’s Facebook page. 

There is a 38 Degrees petition here, and enquiries on Twitter can be directed to @DJ_Paperwork

 

 

Reasons To Be Fearful I – People

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Some disability-related writing I was asked to do is going to be published in a national newspaper soon. I’m excited, proud, all of the correct emotions, but I’m also a bit scared. Scared because putting my head above the parapet can draw more attention than I wanted, and the wrong sort.

In 2015 something bad happened. Every socially anxious person’s worst nightmare, and I lived it, for months. Friends unfriending, blocking, ghosting, and worse – being talked about, lied about, with no way to see what was being said. Strands would reach me from time to time, each time more exaggerated or fictional than the last. At my darkest points, I pictured it like a virus infecting every aspect of my social life, every group I was affiliated with (after all, everyone is connected these days). I wrote blog posts in my head daily, of what I could say to try and control the narrative, but always resigned myself with the fact that trying to do so would make things worse. Which is why I’m not doing so now, in fact. I’m still too anxious. But this is where being in the public eye comes in. I started to notice a pattern back in 2015, small but defined. When a blog post was shared around, or lots of people retweeted one of my tweets, I would have a drop in followers. It seems exposure led to a backlash, as some people made it their civic duty to tell others to unfollow me because of what they’d heard . It was hard to swallow, but I would eventually, after months of self loathing, tell myself that people who believed rumours about me weren’t worth having as friends or acquaintances. Sometimes I even believed myself. Even though it’s boiled over, now I’m getting more exposure for activism and writing it’s making me anxious in case it starts up again. The fourth? fifth? whatever wave of it I’m up to now. In a way I feel I’m more able to cope. My friendship groups have comfortable, equitable dynamics, and I’m not going through social destruction at the same time as trying to fight for the benefits I need to survive (2015 was not a good year).  But, all the same, despite being a stronger, more self-assured person these days (at least to an extent), I hope fervently that actually getting a readership won’t lose me friends. I hope the friends I have now know me well enough to know my principles. 

(An alternative take is I Survived Every Socially Anxious Person’s Worst Nightmare and that in itself is amazing, but I won’t lie and say it doesn’t still affect me. I can’t talk about it without crying. I avoid certain venues and events in case of seeing specific people. I can’t make a new friend without trying to work out how if they’re socially connected to anyone involved, and if they could already have heard of me in a negative way. And I am incredibly, incredibly scared of having an argument with any friend, or being read the wrong way. I screen cap conversations that I worry could come back to haunt me, for fear of being gaslighted again. But mostly I’m just thankful that I didn’t give up entirely, or failed in my attempt to, because it did get better. After nearly a year it died down, and I sat in the ashes of my self esteem and rebuilt from the ground-up.)