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Nina Childish

~ and various brain kittens

Nina Childish

Author Archives: ninachildish

Access Review – London Palladium

19 Sunday Feb 2023

Posted by ninachildish in access, Accessible London, Reviews

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access, access review, Accessible London, London, London Palladium, wheelchair access

Danger: May contain accordions.

The London Palladium is one of the capital’s most celebrated theatres, having hosted shows and revues since 1910. It has just under 3,000 seats and a few wheelchair spaces. We visited earlier this week to see Weird Al Yankovic – I will not accept any shaming! – and I realised that this must be the first time I’ve actually been there since I was about 9 when my dad took me to see the celebrated revivial of Oliver! (which I now know starred Jonathan Pryce as Fagin – no wonder my dad wanted to see it!). I am familiar with Argyll Street, though, having spent many Friday evenings as a teenager rushing there as soon as I could after school to purchase tickets (in person! with cash!) from Stargreen’s box office for gigs in far less fancy venues. I have some surprising nostalgia for those years, when I didn’t worry about access issues and when £30 was considered a bit steep for a concert. When, as my erudite Welsh friend puts it, I’d throw myself into mosh pits full of 6ft+ metalheads “like f**kin Bambi on ice” despite being about as sturdy as a matchstick model held together with bubblegum. Considering it turns out that I do basically have bubblegum for connective tissue I’m amazed I never ended one of those nights in hospital, but I did come home with my fair share of giant bruises. Back then I could never have imagined going to a gig without standing/dancing/pummelling the hell out of a stranger then sharing a beer with them. I digress, but it’s amazing what I remembered as we turned into Argyll Street. Now back to our regularly scheduled review:

Getting Tickets

The Palladium is a member of the LW Theatre Group, whose access scheme allows members to book online and to book tickets over the phone without having to send proof of eligibility for wheelchair space or companion tickets every time. However, I chose to phone them for this event and there was no problem processing my order or adding the extra ticket.

Getting There

This is far easier than it used to be thanks to the fully accessible Elizabeth Line! Before it came along, if I wanted to go anywhere in the Soho, or Mayfair areas I would have to go to Green Park and go on the pavements through tourist hell from there. Taking the Elizabeth Line to Bond Street brought us out just a 3 minute roll from the theatre which was perfect.

Entrance

Next to the steps to the grand circle outside the theatre (so to the left of the image above) is a gently sloped passage where a member of staff took us through into the theatre. From there we were met by a dedicated access staff member who took us in a lift to the level of the bar and our booked space. The lift is quite small, but I was able to fit in with my midsized powerchair, my partner, and the staff member. The bar is accessible but doesn’t have a lowered area. The merchandise stand was also in this area. To get to the doors into the theatre itself there was a curving ramp integrated in next to the stairs where the access staff member was waiting for guests using wheelchairs and other mobility aids.

Wheelchair Space

The route to the wheelchair space itself and the distance between the spaces and the accessible toilet is the only negative I can find with the Palladium’s access but there is a good reason for it. We entered during the break after the support act, and the access staff took us across the back of the theatre, around a rather steep corner (it was a struggle to keep all wheels on the ground!), then down along the sides of the stalls seating. As you can imagine, this included quite a lot of “excuse me please” and “mind your feet!” because there wasn’t a lot of space for people to move out of the way. The spaces were right at the front on the ends of rows A and B, and occupied by myself and a young man in another powerchair. Because of the way the spaces were so close, if I’d needed to leave for any reasons he would have had to move out into the aisle too and it would have been quite… beepy. I can’t fault the Palladium, though. The access staff member told me that they used to have the wheelchair spaces at the back row of the stalls both to avoid the issues getting down the aisle and also to keep proximity to the accessible loo, but while this works well for the pantomime, it doesn’t work quite so well for concerts where audiences often stand up and dance/cheer and block all view for the people in the back who can’t stand up! (I remember this problem from Father John Misty at the Barbican, but luckily that was only during the last song!) We were also positioned right next to a speaker, which didn’t impede our view but did make it quite an overly loud experience in my right ear. I’m not sure if the sound system was set up specifically for that one show, though.

Services

It’s always appreciated when theatres have dedicated access staff, and it’s easy to tell when they are proper Dedicated Access Staff and not “the staff member who was put on wheelchair duty that day”. I can’t fault them at all. There was a queue for the loo afterwards and one of the staff was telling us how she was now a mental health first aider, and how she sometimes had to take overstimulated kids out of the seats to decompress, hand out ear defenders, or let off steam by dancing or stimming at the back of the theatre. It was lovely to hear that it’s not just physical disability that is treated well at the Palladium and we were very impressed with the staff there.

Toilets

There is one accessible loo at the Palladium, located through a door next to the entrance into the stalls. The vestibule which it is in also holds transport wheelchairs, walkers etc. belong to patrons who can transfer into theatre seats or collect their mobility aids after the show. The loo itself is an impressive size for a West End theatre – I was able to turn my wheelchair around to leave instead of reversing out by ramming the door – however there is no room for side transferring due to placement of bins. There is a large grab-handle on the door to close it, but the lock is a small turning one which might be a problem for someone with grip difficulties.

Overall I was pleasantly surprised and impressed. My experience of West End theatres since using a wheelchair has ranged from difficult to very difficult on the whole, and it’s great that the Palladium is bucking the trend. All the great staff in the world can’t make up for poor access, but the Palladium wins on both counts.

and now:

Airlift

27 Friday Jan 2023

Posted by ninachildish in Housing, Uncategorized

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Housing, Mental Health, personal, relationship

Things have changed. Suddenly, or at least it seems sudden, I’m not looking for a flat to rent. We are looking for a house to buy. Together. It’s still made more complicated by disability and my lack of work, but it’s within sight. It feels sudden because for 5 years of our relationship housing was something we dealt with separately. For 5 years I tried to find somewhere appropriate to live, with the assumption I’d be there on my own. C moved between rented rooms, his own flat, here, and his family. Then the pandemic happened and he was here with me, sacrificing months of rent money to make sure I wouldn’t be on my own during lockdowns. For almost two years we were bubbled, making a go of being a “household” and learning just how much we could get on each others’ nerves but also just how well we worked as a cohabiting couple. It was that, the pandemic. Those two fraught, surreal years that now comprise a quarter of our relationship and felt like a matter of weeks and an eternity all at once.

Then more things happened, rather quickly: I inherited some money when my beloved grandmother died, which pushed me out of qualifying for housing benefit and made the prospect of getting a rented flat a lot more difficult; C got a better-paid job; my mum sold her old house and pledged the profits to me for housing. Suddenly the two years of cloudy pandemic uncertainty cleared, and we realised we’d jumped over that “together but separate homes” stage, realised we’d already been doing that for 7 years. In that time many couples have long since moved in together, and I have had many moments of upset and frustration in that time about my access needs and the horribly punitive benefits system stopping us doing it sooner. But those things fell into place, almost without us realising what picture they were creating, and soon without really having any formal conversation about it we were discussing “our home” as a real thing that was actually going to happen. Is happening.

I don’t know what kept me from truly believing it, but I didn’t think this would happen to me even over the last several years of this relationship. Somewhere in my mind I felt a certainty that I would be in a state of permanent failure-to-launch, that the brain-and-body maladies would keep me stuck living in this flat full of 20 year old ghosts, or worse – sent to live in another depressing poky bedsit in a rundown block attended by disinterested and patronising support workers. That’s where my mind kept going in the years I was looking for housing, that I would be stuck there again in a situation worse than remaining here (where I can still see scenes of violence and fear play out like holograms in every room). In all honesty, I just didn’t think about the future because I didn’t know if I was going to have one. I definitely didn’t think it would involve someone else, and there are a lot of feelings to sort through still – some “normal”, and some from the darkest recesses of my brain. It’s funny how even positive things can stir up harmful emotions when you’ve accustomed yourself to feeling undeserving. I’ve spent much of the last 6 months telling myself that I am worthy of this, that I’m not unconsciously pressuring (or hypnotising, or bewitching) C into wanting to live with me, and that he’s a grown up who can make his own decisions however illogical I find them. He wants to live with me. He wants to own a house with me. We want our life together.


Equal Access Booking: Good Venues in London

19 Monday Dec 2022

Posted by ninachildish in access, Accessible London, Disability, Reviews, Uncategorized

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access, accessibility, Accessible London, buying tickets, disability, London, theatre

Although I review individual venues, including the booking process, I thought it would be useful to keep a list of venues (London-based for now, as that’s where I go to the majority of events) which have easy booking for disabled customers. By that, I mean being able to book online without the extra hassle of having to call or email to ask for tickets, like every other person gets to do. Some of these venues only allow online bookings if the customer is a member of their access scheme (which are always free, and remove the need to constantly provide proof of disability) and I have pointed out where these are applicable. I am focussing on the provision for wheelchair users specifically, as this is my own experience. Do please let me know if I’ve missed any venues out!

Barbican

The Barbican operates a good access scheme, and has obviously put a lot of thought into making a visit to their City Of London home a less stressful experience for disabled people. While anyone can buy wheelchair space tickets online, access scheme members will automatically have the cost of a companion seat discounted when added to their basket. Blue Badge holders can also reserve a parking space for the time of their visit up to three months in advance.

The Bridge Theatre

Sign up to access list to book online (more info to come)

National Theatre

Actually a complex of three theatres – the main Olivier, and smaller Lyttleton and Dorfman theatres – the National Theatre has an access scheme that doesn’t require much personal information to join, and is more interested in the applicant’s access needs. After joining, logging in to the website allows disabled people to book both wheelchair spaces and companion seats online with no follow up needed. However in my personal experience, despite being signed up to the access list, I can only book the wheelchair spaces online for the main Olivier theatre. Booking for the other two theatres requires phoning their dedicated access line on 0207 452 3961 (11am-6pm Mon-Sat).

Roundhouse

Camden’s impressive 1,700 capacity venue is equally impressive in its provision for disabled patrons. There’s no coincidence that of the ten shows I currently have tickets for, 70% are playing here. The Roundhouse does not have an access list, instead asking ticket buyers to confirm that a member of their party has access requirements before purchasing and has a text box for additional information if applicable. This is followed up with a polite email confirming that a wheelchair space (which comes with a free companion ticket in all cases) has been purchased. In a nutshell, the venue is trusting people not to take advantage of something that is not meant for them. And it seems to be working.

Soho Theatre

Located on Dean Street in the heart of London’s historic Soho, the building is commendably accessible for its cosy space. To purchase access tickets for events Downstairs or for the Theatre without having to call the box office you must have an account on the website. After purchase, the box office will get in touch to ask if you require a seat removed for a wheelchair or if you will be transferring into the seat. They also ask you to please email with your booking reference for a free companion ticket if required. Upstairs is a smaller venue without reserved seating, and while you can buy Access tickets online, this should be followed up with an email specifying if you’ll be needing a space for a wheelchair, and for a companion ticket if needed.

Southbank Centre

This brutalist complex is one of the most accessible venues in London, and a frequent host of disabled performers too. Buying wheelchair space tickets for events at the Southbank Centre is done after simple application to their access scheme, where preferences/needs can be toggled as seen below. Wheelchair spaces then appear on the ticket seats map, and customers have a choice of either a single concession ticket, or a concession ticket and heavily discounted companion ticket combo. When viewing the basket, a notice appears reminding customers that the ticket they are buying can accommodate a wheelchair user only.

Access Review – Cabaret at the Playhouse (Kit Kat Club)

25 Friday Feb 2022

Posted by ninachildish in access, Accessible London, Reviews

≈ 3 Comments

Tags

access review, Accessible London, Cabaret, Kit Kat Club, London, Playhouse, theatre, West End, wheelchair access

It was a mission to get access tickets to Cabaret at the Playhouse but wow was it ever worth the stress! If Jessie Buckley doesn’t get an Olivier out of this I will eat my suspender belt. But onto the important stuff – the access!

Ticket buying I’ve covered here – the best advice I can give if the access phone line still doesn’t work is to email the access champion and explain your issue. Unfortunately it will still involve a phone call to purchase the tickets, which makes it not fully accessible for all patrons.

For this event, the Playhouse has been fully transformed into the inter-war Kit Kat Club. This means atmosphere – decor, musicians, dancers all in an already crowded foyer and bar area and honestly it was slightly overwhelming. If you’re prone to sensory overload, I would recommend getting to your seat as quickly as possible and staying in the theatre area. I’ve put some content warnings in too this time due to the nature of the show, they’re at the bottom in text you have to highlight to view (I am still a rookie at WP formatting, sorry!) – if you’re using a screen reader and don’t want any spoilers then stop when it gets to the content warning announcement!

GETTING IN

There is a wheelchair accessible entrance further along from the main entrance outside. You will have to get the attention of a staff member outside to radio in for someone to open the door. The door opens into the vestibule between the foyer and the seats, and such an effort has been made to evoke Weimar decadence that even that little entrance has been covered in gold fabric!

SEATS

“Unfortunately”, the only wheelchair accessible spaces at the fully-revamped Playhouse-turned-KKC are in the front two rows of the table seats, normally the priciest seats in the house. This puts access patrons in touching distance of the actors in some scenes, for a heavily discounted price. What a shame! We were allocated a lovely member of staff, who escorted me to and from the bar and toilet, and even brought us some complimentary bottles of water in case we got too hot watching the rather racy performance. Having spoken to other wheelchair-using pals who’ve been, advice is to stay in your own wheelchair if you can because the provided seats are not very comfortable (they will remove a chair for you). If you have issues being around food, be aware that some ticket options for table seats include a meal served before the show and during the interval so people around you may be eating. Also a rather important note – there is a hard rule on leaving and re-entering for the stalls area, because the aisles are frequently used by cast members during the performance. Our access host told us that there would be exceptions made for health & disability reasons but there would still be times when it wouldn’t be possible to leave and come back straight away. If you have concerns about this, I would talk to someone at the Playhouse before you book a ticket.

image from seatplan.com – table seats (where the wheelchair spaces are) in view


TOILETS

I can’t complain about the size of the wheelchair accessible toilet here (no having to pee with my feet resting on my wheelchair!), and this one at least had a door that opens outwards, but I’m yet to find a West End theatre that has enough space in there for a patron to side-transfer. However, the red emergency cord reached the floor, and our lovely access host waited outside to escort me back to my seat – a necessity because as I mentioned before, the foyer/bar area gets very very busy and being below eye level I would have had to start ramming ankles to get anywhere without him clearing a path!


CONTENT WARNINGS (highlight below to view, they’re written in white)

It’s Cabaret turned up to 11 – I’ve seen a few productions of it before (including the rather sanitised version my high school put on) but where most have been highly suggestive, this was overtly sexual. Aside from that, there are multiple instances of antisemitism (unavoidable without cutting major plot lines), references to abortion, and an incidence of domestic violence. There is also one “jump scare” in the form of an unexpected loud bang – ask a host if you want to be prepared for when this happens.

WTF ATG? (now updated)

06 Monday Dec 2021

Posted by ninachildish in access, Activism, Disability

≈ 1 Comment

Tags

access, Ambassadors Theatre Group, buying tickets, customer service, disability, theatre, wheelchair

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.

UPDATE (shamefully late):
So, after posting this blog I sent a Polite But Scathing Email © to the “access champion” address listed on the ATG website. Someone replied quickly and after explaining my problem he gave me a mobile number to call the box office directly to purchase tickets he’d reserved for me in the meantime (which took a further three days as the line was only operating on limited hours). I was able to sort out tickets for a show in the middle of January a whole 16 days after first trying to get them myself. (They finally replied to my partner’s initial email to the access inbox 5 weeks after he sent it!) The silver lining was that the only wheelchair accessible spaces are at the very front of the table seating and at a fraction of the eye-watering price. My experience has been fed back to ATG’s access coordinator and I hope it helps to improve things for wheelchair users and others who need access tickets – please let me know if you’ve had good or bad experiences with them!

My review of the Playhouse-turned-Kit Kat Club is here. 

The Good Samaritan

16 Tuesday Mar 2021

Posted by ninachildish in Blog, Disability

≈ 4 Comments

Tags

disability, harassment, London, police, safety

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 ninachildish in Blog, Disability, Mental Health

≈ 1 Comment

Tags

coronavirus, lockdown, Mental Health, personal

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.

 

IMG_4629

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!

IMG_4735

cosy in my cocoon

 

Force Majeure

16 Monday Mar 2020

Posted by ninachildish in Blog, health

≈ 2 Comments

Tags

coronavirus, health, pandemic, quarantine

Priorities have changed so quickly in just a few days.
Housing? Not important.
Getting mental health support? Not important.
Attending hospital appointments? Not important.
All that matters is staying healthy and not contracting the virus raging around the globe at the moment. I’ve not had a flu or other major virus since being diagnosed with heart failure in 2018 and I don’t want to put it to the test with something so catastrophic to people with existing heart or lung conditions.

I don’t know when normal life will resume. It’s hard to get my head around the scale of this. It’s unprecedented in my lifetime, my parents’ lifetimes, my grandmother’s lifetime. Friends are losing jobs, businesses will shut down due to lack of customers. People I know are going to die. Everyone will lose loved ones. It still doesn’t feel real.

We’re considering decamping to my grandmother’s for the next whenever because there’s so much more space than in this flat, and if my dad gets ill then my gran can still be looked after without risking bringing in outside help. I’m waiting to hear back from my dad, but my cousin has offered to drive us up to so we don’t have to use public transport. We need to find out whether I can get my prescriptions sent up there or if I’ll have to change GP surgery for the time being first though. No point quarantining to stay healthy if I get ill from not having my meds. I feel so privileged that my partner has offered to stay with me throughout this, even though he could go back to his flat or his family home. It’s a huge sacrifice for him, if he stayed alone he would have far more freedom.

Please stay safe out there (or in there!). Practice social distancing, and good hand hygiene. If you or someone you live with has existing health problems, stay in if possible and limit physical contact with each other if you have had contact with others outside. Keep an eye out for your elderly and vulnerable neighbours. This pandemic has already brought out the worst in people, grabbing supplies from each other and hoarding essentials when some have none – now it needs to bring out the best in us.

 

The Never-ending Existential Crisis of Chronic Fatigue

31 Friday Jan 2020

Posted by ninachildish in Blog, Disability, health

≈ 7 Comments

Tags

chronic fatigue, chronic illness, ehlers-danlos syndrome, existential crisis, heart failure, managing chronic illness, personal

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

Posted by ninachildish in access, Accessible London, Disability, Reviews

≈ Leave a comment

Tags

access, access review, accessibility, Accessible London, London, theatre, wheelchair

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!

IMG_3496

 

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!

 

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