Category Archives: Disability

WTF ATG?

06 Monday Dec 2021

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New lows in access bookings.

No “sorry for being so irregular at updating this” preface this time, let’s just jump right in.

We are trying to buy theatre tickets, specifically to Cabaret at the Playhouse in London’s West End. We love the theatre, and go multiple times a year (when pandemic conditions allow). This year we’ve been to the National Theatre to see Under Milk Wood in July, and last week went to Alexandra Palace Theatre for Mark Gatiss’s A Christmas Carol (also an excellent example of how to do disability representation on stage, btw!). For the National Theatre we had to call, but they answered very quickly and sorted us out, and for the Alexandra Palace Theatre I emailed customer services there who sent my details onto the ticketing agent who, again, got me set up with tickets very quickly and efficiently.

And then there’s the Ambassador’s Theatre Group (ATG), of which the Playhouse is one. They deal with all online and access ticketing for their theatres. And boy, do they do it badly.

C emailed their customer services about access tickets 10 days ago, as there is no special email for this need, with the aim of surprising me with tickets to Cabaret as he knows it’s one of my favourite shows, if not the favourite. However, five days ago he decided to tell me he’d tried this because the only response he had back was an email stating it could take up to fifteen days to get a reply (let alone complete the booking!) and, because going to the show is more important than the surprise, I said I’d start calling to increase our chances of getting to see it. I don’t think, however, that the collective 90+ minutes I’ve spent on hold since then have helped us any. The access line promoted on the website is no longer in use, and the one we’re told to call instead has no listed operating hours. Combine that with no queue system on the phone line itself which tells you how many customers are in front of you, I was left with the idea that I was hanging on for an unattended line in an empty office.

With the days going by, and the tickets unsurprisingly flying out of the box office, I sent another email today pointing out the extreme discrepancies between our experience so far and the one a non-disabled patron would enjoy (*click* *click* *type in card details* *done*). It’s since been forwarded to “the appropriate team” but the quick reply (as they will reply quickly when you mention breaching the EA2010) obviously had to mention the fact that the general customer service line was also very busy. Which is utterly beside the point, because I’m only trying to book tickets. That which the average patron can do in under a minute has taken us over ten days so far.

Money might make the world go around, but to get tickets you need full health too.

I didn’t think anything could be worse about West End theatres than the endemic accessibility issues we have to suffer in the listed-building theatres (see a myriad of now-fixed issues here). It turns out ATG’s accessibility service is threatening that crown! Through thorough perusal of their confusing website, we’ve learned that every ATG theatre has an “Access Champion” which makes me wonder why on earth their customer service to disabled patrons is still so appalling. I’m going to send a (far friendlier) email to the attached “champion” of the Playhouse theatre to see if that helps matters in this instance, but this is about far more than me getting tickets to the show I want to see. This is about making a fairer and more equitable system for disabled people to access the arts, company by company. We might not be able to change the access in the venues, but there is no excuse for such shoddy access ticketing.

to be continued, I hope….

The Good Samaritan

16 Tuesday Mar 2021

Posted by in Blog, Disability

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I wrote this a year ago, the night it happened. I wanted to get the details down while they were fresh in my memory, but as it turns out this didn’t matter. A police officer came to my home a few days later, and told me that because the incident had happened off the bus they couldn’t use the bus CCTV to try and identify the man because it would “violate his right to privacy”. The (male) police officer also suggested that the man might have honestly “just been trying to help”. Because of lockdown and my health risks, I’ve not been on a bus since and that’s been the best help in dealing with this. I’ve decided to post it now, though, because of the outpouring of stories women have been sharing since Sarah Everard was killed and because disabled women are at risk too – often under the guise of “assistance” like this. 

Two men are facing me, sitting in seats separated by the aisle; it was clear they’d been having a conversation, thrown together by late night commute. Talk quickly turned to the wheelchair ramp, which didn’t want to go back in. We sat while the alarm beeped and the recalcitrant ramp moved a few centimetres at a time towards its goal, sharing weary head-shakes, eye rolls, “oh TFL” sardonic grins, until eventually the bus was able to move off. I learned on the short journey that the man on my right was heading somewhere unfortunately far off the night bus route and not looking forward to the 40 minute walk. The man on my left asked me some questions, none about my disability, which I answered coolly but politely (my age, why I was out so late, if I needed help). It’s ingrained in me not to ignore questions, even from strangers. Say something or it’s rude, but include as little information as possible if you don’t feel like a conversation. Politeness will get you everywhere, including into trouble.

At my stop the ramp deployed properly but then, of course, refused to return to position. The driver got out of the bus, and excused me from trying to assist. Wishing him the best of luck, I got around the corner of my road before stopping for a minute to answer a message on my phone with my dominant hand, the one I use to control my wheelchair. I can hear someone coming up behind me, and move over a bit to let them pass with more room.

“Hello!”
To my surprise the man from the left hand side of the bus is walking up to me.
“I just wondered, did you need any help?”
I didn’t remember him getting off the bus at my stop, but maybe since the ramp was taking its sweet time going back in, he had time to come and ask – many non-disabled people offer me assistance like this in the average week, both underestimating the power of my electric wheelchair and the extent of TFL’s accessibility infrastructure (if you’ve never needed to use a wheelchair ramp on the bus, for example, you may presume the driver is about to leave without letting a wheelchair user off, but the doors need to close for the ramp to be deployed).
I said no thank you to his offer of help, and this where most people stop.
“But you must need help!”
Again, no thank you, I explained that I manage this journey into the city and back multiple times a week (slight embellishment for emphasis on my independence) and don’t need help getting into my own home. He changed tack:
“What is your name?”
I couldn’t pretend to be distracted this time. My mind sticks on Elly Higginbottom. “Elizabeth”.
“Elizabeth… Elizabeth, oh Elizabeth…”
the wavering red flag I’ve felt since he appeared on my road suddenly springs upright
“I think you should probably go back to the bus” (although I was vaguely aware of having heard it drive off a moment before) “you don’t want to miss it”
“Let me help you, Elizabeth”
He speaks gently, but as if he’s already decided on the course of action and he’s just asking first because it’s a social norm.
“No it’s okay, I’ve been travelling on my own since I was a teenager, I don’t need help”
“No Elizabeth, where do you live? Do you live here?”
Deflect, deflect, deflect (and lie) “About five minutes away, look it’s nearly 1am I just want to go home and go to bed it’s really late, so…”
“Can I come with you, walk with you?”
At this point, I am acutely aware that the late hour means that most of the people on my residential road are in bed. Footfall is minimal, as are passing cars. My wheelchair has lost some battery over the course of the evening and is now running at a medium-fast walking pace at best. The priority is not to let him know where I live, which means cutting contact with him there at the end of the road.
Direct, direct, direct “No, sorry. I just want to go home, have a cup of tea and go to bed”
This seems to encourage him in a new direction, unfortunately.
“Can I come home with you and have a cup of tea?
“No, sorry.”
“I can stand outside even, not in the house, just a cup of tea”
“No” – no more “sorry”, because the red flag is getting ominously brighter
“Coffee”
“No, I just want to go home and go to bed”
“Can I not come for one cup of tea?”
“No, sorry [argh] I’m not going to take a stranger home with me in the middle of the night” (slight lie, ask my second year housemates)
“But I won’t be a stranger soon, we are at the beginning of something”
fifty fucking red flags are waving in my face
Now desperate, and not sure when I went from feeling hassled to actively scared, I try to override my British-Canadian double whammy of natural politeness and the wobble in my voice.
“Leave me alone please. I don’t want you to come home with me and I don’t want to talk to you any more.” Said as forcefully as possible, being very aware to put on an apologetic smile at the end to dampen the rejection. Everything in me is screaming “don’t make him angry” so the urge to just keep him placated is overwhelming, but also things have been slowly escalating in the last three minutes and I am very worried about where they might end up. I start to silently pray for someone to come walking past.
“You don’t need to speak aggressively to me Elizabeth” I think I do
Since he mentioned coming to my home I’ve been thinking of what is open at this hour nearby on a weeknight. Nothing on the parade of shops to the left, the corner shop closed two hours ago. The pub on the right? No one’s in the beer garden having a smoke, so I can presume the doors are locked. I’d have to roll 15 minutes into town to find anywhere open, and he already knows that isn’t my way home.
In utter desperation I use my last card.
“If you don’t leave me alone, I’m going to have to call the police”
“You don’t have to do that, Elizabeth, I am not-“

I see a man on the other side of the road, strolling briskly in the direction of my flat. I immediately cross the road (thank heavens I stopped on a drop kerb) and go after him, occasionally shouting to try and get his attention, but he is wearing headphones and doesn’t hear either me or my high-pitched (and usually ineffective) wheelchair horn. I follow him for close to five minutes, passing my house on the other side, never getting closer than 2 metres away thanks to the reduced battery life, and too scared to turn around to see if there’s a figure in a red hoodie following me. I think about calling the police but don’t think their priority in North London at night is to come to the aid of someone who may or may not be being followed, and in any case the local station closed down years ago and it could take hours. By the time the man with the headphones crosses the road at a point where I can’t follow him, never knowing that I tried to get his attention, I’ve made a list in my head of anyone I know nearby who might be awake (but still probably isn’t). I can’t hear footfalls over the sound of my wheelchair, but I don’t want to stop so I take a convoluted route through the residential side streets, making sure that if he’s still following me I could still be feasibly “going home” (and realising that I am still considering his feelings although I can’t tell if it’s out of tact or fear of angering him). Eventually I stop and look back. Nothing. He hasn’t followed me. My only worry now is that if he was savvy enough he might have gone up and down my road looking for a wheelchair ramp. I call my upstairs neighbour, guiltily aware that I will most likely be waking him up, but after three attempts realise his phone must be on silent. Scanning mentally through the rest of my potential awake people list, I message the neighbour who lives near the end of the road where I had the encounter with the bus man. She is in bed, but says she’ll stand at the window and look out for anyone wearing a hoodie. I know this won’t help if he’s found my house in the meantime, but at least I don’t feel quite so alone. Forty minutes after getting off the bus, I come back onto my road from the opposite end to the bus stop, barrel up the ramp to my front door and put the chain on after it shuts. 

Lockdown Privilege?

17 Friday Apr 2020

Posted by in Blog, Disability, Mental Health

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So it’s been almost a month of lockdown in the UK, and we’ve been told there’ll be another three weeks on top. No socialising with those outside of your household, essential travel only, no unnecessary trips outside. Many people I know are struggling with this, missing friends, their social lives, even work. But me? I feel in a weirdly privileged position because not very much has changed for me at all, if anything things are better than they usually are. I don’t know if that’s more fortunate or a sad indictment of my normal daily life.

I’m feeling fairly mentally resilient at the moment –  this is a situation that I am not only prepared for, but thrive in. Because of my varying health I tend to only leave the house a few days a week, not usually to socialise, but often just to write, or read newspapers in the coffee shop as I find it easier to concentrate out of the house. Replacing the coffee shop with a Nespresso machine was fairly simple, a bit harder to find my motivation though (more on that in a bit). My quizzing life, too, has been almost seamlessly replaced with an online league via Zoom, which has zero accessibility issues for me unlike most of the venues we quiz in normally. I’ve been out a few times for rolls around the neighbourhood – not “exercise” but arguably good for mental health and vitamin D levels – except the fear of contagion slightly diminishes the mental health aspect, so I have invested in a hammock for the garden so I can enjoy the sunshine secure in my safety.

 

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A rather nervous roll around the neighbourhood.

 

Self isolation means a lot of people are spending more time on their own than they ever have before, but for me and Chris, my partner, it’s been a sudden cohabitation simulation! He knew I wouldn’t be able to physically cope on my own for however many months we thought this might last, so just before the lockdown was announced he went back home and packed a bag of clothes, cooking ingredients (yes really!) and his Apple TV plug in. Unlike normal life, where I mostly rely on ready meals, I’ve been having fresh home cooked meals every evening and company for most of my waking hours. I’m so used to being alone for most of the time, it’s both weird and lovely having him here all the time like this.

Lockdown has made me feel a little pressure to *do things* while it’s on, a sort of pretend deadline since I don’t actually have a job or commitments to return to when it’s over. I’m ignoring the existential doom of the latter fact and enjoying having some structure via activities which I will definitely carry over to my normal life: Duolingo (picking up Hebrew again after having to drop out of my postgrad course); planning out short stories  after maybe 10 years since I last wrote fiction; and photography – earlier this week I had an email from the editor of the local independent newspaper asking if I could go and take some shots in my area of pictures and messages of hope people have put up in their windows, which I was more than happy to do. At normal post-work rush hour, the streets were nearly empty of people or traffic, and the air smelled like grass and trees, not of car fumes.

There is a down side to lockdown life, even for quasi-hermits though: everything medical has been pushed back months, if not more. It’s understandable due to the unprecedented situation, but when I’m still having allergic reactions to unknown triggers, and the deteriorating hip situation was only very slightly ameliorated by a new mattress, the fact I likely won’t see either the allergy or pain specialists this year again is frustrating. I’m still talking to my GP about managing the allergies/MCAS?/whatever is going on with that, but still have a whole list of tests at the allergy clinic to get through that can’t be done over the phone. Ditto with finding an effective regimen for breakthrough pain. I have waited years for treatment before though, I can grit my teeth and wait again.
However, one long delay has made me feel rather lucky despite it being a major bugbear for the last few years – housing. Self isolating in my dad’s large, airy ground floor flat with garden access (and, notably, without my dad!) is far easier than I imagine it would be in wherever I move to next, where I don’t expect I will have a garden of my own or anywhere near as much room to temporarily cohabit in. So I guess I can be wryly thankful to the council for their mismanagement of my housing case up until now.

I’ll sign off with this picture of me being a pod-person. I hope you’re all keeping safe and doing okay!

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cosy in my cocoon

 

The Never-ending Existential Crisis of Chronic Fatigue

31 Friday Jan 2020

Posted by in Blog, Disability, health

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Excuse the mouthful of a title, I’m too tired to think of a clever one.

I’ve spent most of the last week in bed, alternating between silently cursing at my body, crying self-pityingly into my emotional support plush toys, and (mostly) sleeping. Post-exertion fatigue hit me like a truck after I dared to go out for a moderately ambitious date day on Saturday. Then yesterday the rage and anger finally settled, self care mode switched on, and I made a series of very small, achievable goals – the last of which was to write this blog post, some of which I’ve been meaning to expand on for quite a while.

These fatigue crashes have been more and more severe since 2014. Although I’ve never been “well”, at least since I was in my tweens, I can pinpoint the day Things Got Much Worse. February 14th 2014, the day I moved across London, once again hopping from one parent to the other (somewhat easier when they’re in the same city, let alone the same continent). That move, although aided by my dad and my then-partner, precipitated a catastrophic crash – whether from emotional or physical stress I couldn’t say, but it was this which led a GP to prescribe me painkillers for the first time, and refer me to the UCLH Hypermobility Clinic for assessment and diagnosis. Since then I have lost count of the crashes, but the pattern is always the same: I never quite manage to regain the ground I’ve lost before the next one comes.

Thinking about that, the ground lost and not made up, has made me philosophise this week in between the sleeping and gradually dissipating rage. What am I fighting with myself for? I never had health, I just had a genetically-cursed body trying desperately to keep up with those of its peers, constantly wondering why I found everything so damn difficult when no one else seemed to. I spent 15 years thinking I was just unfit, or that eventually my body and mind would align and reconcile with what was expected of them. I think this could be called internalised ableism, no thanks to the doctors who told me these things. “Everyone gets aches and pains sometimes” turned into honestly believing until I was in my mid-20s that everyone was in pain constantly because that was my reality. From a young age I was constantly trying to attain something that I couldn’t reach, but didn’t know I had no chance of gaining – a body that was not disabled, that did not hurt, that did not inexplicably need so much more rest than others. Similarly, I cannot fight to regain health I didn’t have to begin with. My body does not need me to be angry with it –  that is energy I could be spending elsewhere –  it needs comfort, rest, and patience, no matter how hard it is to give it those things when I feel it is betraying me.

You cannot hate your body into being healthy

Self-care mode involves making aphorisms on design apps.

 

Of course, reconciliation with an oppositional body is only one aspect. The rage and tears of the last week were not only from frustration with my body, but pent up from years of watching my life pass before my eyes un-lived. I have always been a late starter. I walked very late (although I was a precocious reader, go figure). I did my GCSEs a year late thanks to moving countries. I did my A-Levels in my early 20s, because my late teens were a nightmare, and subsequently started university late. Of course, I also graduated a year after I was supposed to because of my health. I am reconciled with being permanently behind other people in their early 30s; what I struggle with is feeling like all I am doing with my life is sitting and watching the days pass. I used to have dreams I felt I could achieve despite as-yet-unnamed pain and fatigue issues – to travel more, work abroad, continue teaching English, continue with photography on a professional level. I’ve written before about the pain of not even being able to write posts like this one, of the fear that I won’t even be able to connect my random strings of thought together in a meaningful way one day, or any day again. Brain Kittens refers playfully to my legendary distractibility; added fatigue makes the ability to keep a train of thought going far far harder. But even when I have slightly more ability than I do at the moment, I still get a nagging feeling that there’s something more I could be doing right now, something to set myself up for the future, just in case things get better. Just in case. In the last six months I’ve bookmarked disability internship schemes, evening postgrad journalism courses, BSL classes, activism bootcamps, but the reality is the same: I cannot throw money away for something I won’t realistically be able to manage, or that I would make myself seriously ill attempting to keep up with. When I can reliably get somewhere once a week, when I can make all my medical appointments in a month, when I can go out two, even three, days in a row without having to rest at home for a week afterwards, that is when I can look at these exciting things.

The truth is, though, I don’t know if I will ever get to that point. I’m waiting for a miracle that might not happen. However nauseatingly positive* it sounds, to avoid falling into complete existential despair, I have to cling onto that little shred of hope that one day things might get better. That one day I will be – just a bit, but enough – better.

 

[*Nothing wrong with being positive, of course, but I’m snarking mildly at the ill-girl tropes here.]

Access Review: National Theatre/Lyttleton Theatre

22 Sunday Sep 2019

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It’s been quite a while since I’ve done an access review, but since I’ve been to the theatre a few times recently I thought I’d dig into my notes and do another one. After all, this was what my abandoned blog and remaining Facebook page are concerned with (I was overwhelmed juggling two blogs and a FB page, so decided to write the reviews here and crosspost to the FB page!)

I took my dad to see Rutherford & Son at the Lyttleton Theatre, part of the National Theatre complex on the Southbank at the start of August. As with most access reviews, there’s good and bad stuff in here that I hope you will find helpful!

Getting Tickets

Lets get the bad news out of the way first, the National Theatre is one of those theatres that wants disabled patrons to sign up to an access list first before they are able to book tickets. However, unlike many of these schemes, they do not require an overly intrusive “proof of disability” such as scans of PIP letters or blue badges which was appreciated. They ask about specific needs, which include aisle seat, wheelchair space, audio description or captioning. After getting confirmation that my access list application had been received and filed, I could book the wheelchair space and companion tickets on the website, which was also greatly appreciated. There’s nothing more galling than having to phone to book access tickets as the only option, only to have 20 minutes of hold message telling you how much easier booking online is.

 

Entrance

Perfect. Being a large complex of three theatres next to the wonderfully accessible Southbank Centre and BFI, the National Theatre has full wheelchair access. No platform lifts, no precarious ramps. Entrance to the Lyttleton Theatre was well signposted, and while a good portion of the audience headed for the stairs or the lift, we were shown to a door in the wall which led to the wheelchair space at the top of the stalls seating. And here I found the only problem…

 

Wheelchair Space

With four spaces available, the Lyttleton Theatre has more wheelchair spaces than the average London theatre, where sometimes there are only one or two for a capacity of hundreds. All of these spaces are in Row V, at the back of the stalls where the view is still acceptable. However, something was missing in Row V – the companion seat!

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Those are my pixie boots, and just in front and to the left of them is my dad’s seat, in the next row down. The purpose of  a companion ticket is to support the disabled person if necessary. If I had needed help during the performance, like needing to leave to go to the toilet, or help with emergency medication, it would have been disruptive for the rest of the patrons as my assistance wouldn’t be right next to me and I’d have had to adjust my wheelchair (beeping, whirring) to reach him! Also it did make for quite an isolating theatre experience being up on my own next to the sound desk!

If someone with far greater needs than myself (such as needing assistance with drinking) were put in this wheelchair space, then there is no way their companion would be able to take the booked companion seat, and I wonder what would happen then?

Services

No complaints here either. The atrium of the Lyttleton Theatre is in the wider National Theatre lobby, and the bar and café are on the same level as the entrance and level-access door to the theatre.

Toilets

Fine – roomy, red cord dangling as it should be, no nappy bins blocking access. Though it should be noted that the toilets (including the wheelchair accessible one) are located in the main foyer of the National Theatre, and any members of the public can come in and use them so you may find yourself waiting if a passing wheelchair user gets caught short!

 

Overall, because it’s part of the larger National Theatre complex, the Lyttleton Theatre is very good for access – notably when it comes to booking tickets and getting around the building. The only way it let itself down was the set up of the wheelchair space and companion seating, which should be an easy enough fix. As always, I will update if I hear anything back from the theatre or someone else visits and gives me news of positive change!

 

Housing Doldrums – when is progress not actually progress?

08 Thursday Aug 2019

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In May, 28 months after first applying to the council as needing housing rather urgently, I was accepted onto their Homefinders scheme. This is where private landlords list their properties and us lucky property seekers can then bid for the right to rent them. Applicants are placed in the queue based on their assessed needs and urgency to move.

So far so simple.

Except not. In March I found out I had been placed in Housing Group 3 – extra health and wellbeing needs – which sounded accurate on the surface, until I learned that Group 5 was the group for those who need wheelchair accessible properties. My advocate and I queried this, as I rarely go anywhere without my powerchair and absolutely need it for independent living, but were told that Group 5 was only for wheelchair users that need to use their wheelchairs inside their homes as well as outside. Fair, I do not need to do that at this point as long as I can have reasonable adaptations made. But this left us with an issue – does Group 3 ever get offered wheelchair accessible properties? We asked the council multiple times in emails, going as far as to request a face to face meeting so I could get a straight answer, but no joy. We were also told that there were many other applicants in the group, and my chances of getting anything via the council were so slim that I should continue to look privately or consider a low cost homeowners scheme (hello, where is the bank that will give a mortgage to someone existing solely on disability benefits?).

So as well as frustrating myself to tears looking through property sites for accessible and affordable flats (as I have been doing since early 2017), since May I’ve been logging onto the Homefinders site weekly to see what’s listed as available for me to bid on. I’ve never seen more than 4 available in my strict category (1 occupant, 1 bedroom) in one week, and to answer my own question to the council it seems that wheelchair accessible properties offered to Group 3 are sparse. I’ve seen one so far, and it was on the ninth floor of a tower block far enough removed from public transport that even the site listed it as such. Even yesterday, a friend alerted me to a property listed that had a “roll in shower” so must be wheelchair friendly? Nope – third floor, no lift. We’re going to try and push again for that data on accessible properties, or a face to face meeting.

What else in the meantime? I’ve applied to two different specialist housing organisations in the last couple of weeks, although I’ve not even had an acknowledgment of application from either of them, and since posting a desperate tweet to find any other links/HAs/charities/flats for rent I’ve got a couple more to try.

It’s hard keeping my head above water right now. I can be in a perfectly good mood then think too much about housing and start going under. I tried to access private therapy to deal with the trauma around housing and homelessness from my previous experiences, but something got in the way – lack of wheelchair accessible therapists. The irony is not lost on me. I’m even considering reapplying to my local CMHT for help, but I’m not sure I’ll be accepted since in November they kicked me off the therapy program I was on because my housing issues were monopolising my thoughts and causing more acute mental health issues, distracting from the longstanding ones the program was designed for. If I don’t laugh I’ll scream

And that’s where I’m at now. I know I’ve been crap at updating this, it’s hard to pull the brainkittens together to write something longer than a tweet – see last post – but I’m trying to write it out more. It makes me feel less lost and confused, writing it all down as a record of what happened too. I’ll do a medical update one at some point, but it seems less urgent.

Thanks to everyone who’s retweeted my plea – so far 674 of you! Please keep it going, any advice, any ideas are appreciated. Even if it doesn’t get me a property to rent, I hope that it wakes people up to the appalling lack of wheelchair accessible properties in this country.

the intersection

22 Monday Jul 2019

Posted by in Activism, Blog, Disability, health, Mental Health, Uncategorized

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I’ve spent the last few years insisting that my worsening physical health isn’t impacting on my mental health; that maybe occasionally my brain will mistake not leaving the house for days at a time for depression and slump accordingly; that I don’t grieve for the abilities I’ve lost. I find denial a powerful coping mechanism, but one that only lasts so long.

It’s not that I never get a bit sad about losing my physical abilities. The other night I dreamt I had learned how to click my heels in midair (apparently it was to do with having the right – possibly magic – shoes), and woke up feeling rather wistful, despite not having been to a dance lesson in years . Social media constantly throws up reminders for me of what I used to be able to do – climb a mountain, walk a marathon, stay out all night, walk to the end of the road unaided… I tend to view these prior accomplishments without sorrow; I’m just pleased that I did them while I was still able to. Of course, if I’d known that everything would go so, so wrong before I hit 30, then I like to think I would have done a lot more. For five years in my adolescence I lived on a lake, and can count the number of times I took the canoe out on my fingers. As much as I wish I could go back in time and shake up my sulky 13 year old self into going outside on a bright spring day, instead of spending the day lounging on the sofa with a book, I know that it won’t change the now. At least I have done things, I think. At least I’ve been to places that I couldn’t manage now. I just wish I’d done a little bit more.

But it’s not the physical loss I struggle with. Whether as a result of fatigue, brain fog, lack of ADHD meds or a combination of the three, my ability to sit down and write something longer and more convoluted than a tweet has all but disappeared over the last year. I feel like I’ve hardly done anything in the realm of activism or awareness so far this year – which is slightly unfair as I did write one article and collaborate on another, but it’s hardly the height of productivity. Almost six months characterised by notebook pages and blog drafts with ideas, starts, first paragraphs – and no energy or drive to continue with them.

I have always put more value in my intellectual abilities than my physical ones. As a clumsy, easily-injured child it made sense. Not that I was particularly good at school either. My parents pushed me to work hard (I didn’t) and get good grades (ditto) and I’d throw myself into things that I liked and do the bare minimum with those I didn’t. This is what’s so distressing – I can’t throw myself into my passions as readily as I used to be able to. Thinking through fog I can get a few sentences down, then when I come back to it a few days later or when I’m next able to, the flow is gone. Writing my way through chronic illness and disability has been an invaluable outlet in the last 5 years, and has led to some amazing opportunities, and without it I feel utterly useless, my power centre taken away, my saving grace gone. My self worth is so tied up in my productivity, even my adjusted-for-illness productivity that without having something to be working on, no matter how small, I feel like I have no purpose.

The fog has lifted slightly today, so I’m taking the opportunity to get this down before I lose my train of thought or get too tired. I need to write more, I know this, and write more without worrying about form, readability, coherence. The important thing is that I do write my experiences down, not how well written they are. It’s another mental block to get past.

 

Nilaqua Towel-Off Shampoo

20 Wednesday Feb 2019

Posted by in Disability, Reviews

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Yes it’s product review time!!

(Note: I have not been paid for this review nor has the product been gifted to me in exchange for a review.)

One of the more unpleasant and less Instagram-friendly aspects of chronic illness is the inability to deal with one’s own personal hygiene. I’ve talked about this before (see: A Tale of Two Indignities),  but not about the practical alternatives when you can’t bathe or shower for several days. Baby wipes and sink washes deal with the body, but I’ve always found spray can dry shampoo to last a few hours only, and leave a tell tale white residue on my already-grey-streaked hair. So, on a recommendation from a friend, I decided to investigate Nilaqua “waterless” shampoo.

It sat under my sink for a few weeks until the opportunity arose not in the form of a free afternoon with enough spoons for experimenting, but a genuine “my hair needs to look less gross” emergency – my birthday lunch with my mum and her partner. So with less than two hours until our mercifully-local meal, I draped my towel around my shoulders like Batman in a very cheap beauty salon and pulled the bottle out.

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Hair duly covered – patchiness model’s own

The first step was to cover my hair in it, naturally. It’s quite strange how we’re conditioned to expect shampoos and shower gels to foam up when we rub them in, but they don’t have to do this to be effective – there is no bubble/cleaning power ratio. I did feel like I was using quite a lot of the product, but it covered my hair evenly and didn’t drip. After this the instructions were to massage the product into my scalp to soak up all the excess oils. And then the towelling began.

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To be fair to Nilaqua, it literally says “towel-off shampoo” on the bottle, but this is the part of the process that I felt was distinctly chronic fatigue unfriendly. As a rule, once I’ve washed my hair it goes up into a microfibre turban to dry naturally (a wavy/lazy version of the curly girl method), and hair dryers make me ache too much. So, does it turn out, semi-vigorously towelling my hair for 20+ minutes. Still, I can’t say I wasn’t warned. So I towelled, and panicked about the clock ticking down, and towelled some more and felt like I wasn’t getting all of the product out properly due to rapid energy loss. A few more concerted bursts of towelling, then I dropped the towel, thankful that I’d had a haircut 6 weeks beforehand, and hoped for the best.

After towelling, I got dressed and ran a bristle brush through my hair. What was my first impression? Big. There was almost certainly some of the stuff left in my hair and it was having quite an 80s power hair effect. Still, my hair did look clean. It certainly smelled better, and my scalp didn’t have that horrible gritty feel it tends to get after too long without a wash.

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After styling with a little spray wax it looked more like I usually wear it. Lunch was successful, and my mum had no idea I’d gone for 6 days without a proper wash. Look society, I’m tricking you!!

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Sadly no shampoo, can fix my wild white hair patch.

I would have given it a 3/5 at this point. Easy to apply, no mess, but difficult to remove without knackering myself out (within the context that this is a review for disability assistance products), to the point where I couldn’t remove it all myself.

But then my hair and scalp still looked and felt clean and lovely at bedtime:

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If not characteristically messy. Some things shampoo can’t change.

In fact, two days later it still felt like I’d just washed my hair.

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With that impressive longevity in mind, I boosted the overall score to 4/5. It only lost marks because of the energy it took to towel it off. Of course if someone else had been around to help me with that it might have been a different story, but if that had been the case I wouldn’t have had to use a “waterless shampoo”! This will in all likelihood remain under the sink for those occasions when my fatigue levels and events calendar clash, unless there is someone else around to wield the towel!

You can buy Nilaqua towel-off shampoo from Boots or Amazon, and they also do a version in “shower cap” form as well as a waterless body wash.

The 10 Year Challenge – dealing with change.

23 Wednesday Jan 2019

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For the last couple of weeks the 10 Year Challenge has been sweeping social media, and so far I’ve abstained. It’s not that I don’t like my face now, or my body; I’m happy with those changes. In 10 years I’ve gained a fair amount of weight but love my curves and softness. My hair is still usually short, although a bit thinner and with a lot of white hairs dispersed throughout. I’ve learnt how to use brow pencil. I’ve still not learnt how to pose without looking silly. My personal style is more defined (and still not grown up). But I’ve not been able to post any flashback pictures yet because this challenge holds more poignancy for me than I can summarise in a side-by-side comparison.

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This is me in Utrecht in August 2009, on my last day of a month Interrailing on the continent. Four countries, countless cities, stations, hostels, new friends, and one 13kg backpack. Of course, Ehlers-Danlos Syndrome is present from birth, but it would be another few years before my symptoms worsened and became unbearable, and I sought diagnosis. At this point I just knew I was “tireder” than other people, and that my hips and shoulders could come out of place if I wasn’t careful. Pain kept me awake a few nights on this trip, and I had one day near the end when I fainted and had to stay in bed. But I managed four weeks of varying beds in hostels and stranger’s floors when couch-surfing. I walked miles every day. I carried that monster of a backpack. I got a concussion and cured it with gin. It is an experience that I have absolutely no regrets over, but that doesn’t make it any less bittersweet to look back on.

When this picture was taken I was about to start my second year of university. I didn’t know what I wanted to do with my degree yet. Teaching ESOL was high on my list, and I bought books about countries like Cambodia, Laos, Bhutan, in the idea of maybe going there after I finished university to teach for a bit. It didn’t happen. After graduation I moved back to London and stayed, and as my health got worse and worse my world became smaller and smaller. Part of this is due to the access issues facing all wheelchair users. When I went on that trip in 2009, I booked my flights, my Interrail ticket,  the first hostel and the last one – as well as one night in the bizarre Propellor Island hotel in Berlin. Everything else I played by ear, because I could be spontaneous, and it’s that spontaneity I miss so badly now. Even if I wasn’t too ill to attempt a month of travelling, access issues would come up constantly if I tried to repeat it. Getting to the city from the airport by the hostel’s free shuttle wouldn’t be possible. None of the hostels I stayed in were wheelchair accessible, nor the apartments of people from Couchsurfing or friends I’d made on the trip. The trains and stations weren’t all accessible (none at all in Poland) – and forget just hopping on a train without knowing the precise access details of the destination station and whether the local buses are accessible either. As for the giant backpack (his name is Hamish), I don’t know how that would work now! I’ve travelled quite a bit since becoming a wheelchair user – making up for the previous few years of being mostly stuck where I was – and research is everything. Lots and lots of research.  Spontaneity only happens within the confines of the “places I’ve been already and know to be reliably wheelchair accessible” list, and then only when I’m feeling well enough.

The person in the photograph thought they had everything ahead of them, could do literally anything with their life, and I still often find it hard to accept that so much has changed since then. This weekend I was having a small mope about this subject (which has become this blog post). “It’s so different to how I imagined my life at this point” I cried to my boyfriend. After pondering on this for a moment he replied with some words I need to remember when I feel sad about this: “Just because it’s different, it doesn’t mean it can’t be wonderful.”

 

Spoonless in the South-East

03 Sunday Jun 2018

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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*