Tag Archives: disability

Trains in the Netherlands – outsourcing wheelchair access.

29 Monday May 2023

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The week away was wonderful, and if it’s the only time we go away this year I won’t be complaining. Staying in Utrecht as opposed to Amsterdam itself was a great idea, not just for the much cheaper accommodation but for the much less overwhelming crowds everywhere. It’s a beautiful city to wander around, with lots to do and without the tourism overload. I also cannot praise Eurostar enough, we had a wonderful experience with them and will definitely use them again for trips to the continent.

We knew that staying in Utrecht but planning on visiting Amsterdam would involve More Trains and I admit we weren’t exactly prepared for what this would entail. My previous European train excursions have all been of the more “turn up and go” style as we have in the UK. Our first clue that The Netherlands would be different came when we got off the Eurostar and tried to get a train on from Amsterdam Centraal. The fact that it was pouring with rain and all trains in the direction we needed were cancelled due to lightning strikes wasn’t the worst of it (in fact that bit was rather cool). We knew we’d be waiting a while due to this force majeure, but when we asked about ramps at the ticket office we were informed by a surly station staff member that station staff and train staff alike had nothing to do with access onto trains and it was all done by a different company, a.k.a. outsourced! We decamped to a bubble tea shop and tried to work out the ramp booking website (there was also an option to call a number, but we were concerned there would be more of a language barrier). The first thing we learned was that they needed at least one hour’s notice, then that we had to choose a specific train, and that we were required to turn up 15 minutes before the train to meet the ramp operator. The system also kept rejecting my British phone number, so we entered a made up Dutch one and crossed our fingers that they didn’t send confirmation by text (they didn’t). Having chosen a train leaving from Amsterdam Amstel, which took a non-struck-by-lightning route to Utrecht, we then made a mad dash across the city crossing many of the beautiful bridges, passing flower stalls, historic buildings, and not noticing any of them because of our time limit. Eventually we found the tram stop we needed, which took us to Amstel station.

(An interlude on trams – wheelchair access on trams is great. Unlike the trains, there is a conductor on board and they are responsible for boarding wheelchair users via a manual ramp attached to the inside of the tram door. The bus we took to a small city farm was also excellent, with a manual ramp and large wheelchair space.)

To its credit, the one time we used this system of booking access it did work. We waited anxiously at Amstel, wondering where this ramp person was as we were definitely not “met” by the elevator fifteen minutes early as instructed, but someone did turn up eventually in time for our train lugging a huge multi-level ramp on a trolley to access the double decker train. Likewise, someone was waiting at Utrecht to get me off the train. We wouldn’t try this again until a few days later when we tried to go to Amsterdam for the Van Gogh Museum, but were foiled by a depressingly familiar foe – the broken lift. We did find the ramp operator at the lift, so at least they didn’t think we hadn’t shown up!
In the meantime, a friend living in the Netherlands messaged me with a cheat code – take the often accessible Sprinter train from Utrecht and change for Amsterdam at Breukelen. It takes a little longer, but 2 of the 3 train types used on this route have electronic ramps that pop out of the accessible carriage! Unfortunately this wouldn’t have helped us to make our booking at the VGM on time, but it was very useful to know and we used this method for our remaining trip to Amsterdam and on the way home. It just felt more secure to me than making a booking online then relying on someone else turning up in time. We also found a glitch in the system – we were not allowed to book assistance for a particular platform at Amsterdam as it stated the large wheelchair accessible lift was out of order; what it didn’t know was that my powerchair was an appropriate size for the standard lift but there was no way to explain this.

I fear this might be where trains in the UK are headed, instead of the current turn-up-and-go system (which still has its limitations). With station staff numbers being reduced and the threat of conductors being removed from trains, it becomes a distinct possibility that train access for wheelchair users will become worse, not better. Before I make a journey on the Underground I always check Up Down London for lift status, and it’s incredibly frustrating to find that lifts are out of service “due to a lack of station staff”. If lifts aren’t operational due to staff numbers, then it stands to reason that manual boarding ramps won’t be able to be deployed either at stations which use them. I’ve been told before, when trying to board an Overground train home at Liverpool Street, that there might not be any staff at the station to help me off at the other end “because of the late hour” (it was only 8pm!). In better access change, though, for the last year the Greater Anglia trains we take between London and Norwich have been level access! Actual level access! Roll on, roll off, no fuss! I really wish more companies would consider this when they replace their old rolling stock.

Equal Access Booking: Good Venues in London

19 Monday Dec 2022

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

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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.

WTF ATG? (now updated)

06 Monday Dec 2021

Posted by in access, Activism, Disability

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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.

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 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. 

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.

2009c

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.”

 

Disabled facilities are not storage spaces.

14 Saturday Apr 2018

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“Disabled facilities are not storage spaces.”

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

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

IMG_1720

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

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

IMG_0101

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

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

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

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

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

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

12 Sunday Nov 2017

Posted by in Activism, Disability, Government Cuts

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

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

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

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

The testimonies speak for themselves:

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

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

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

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

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

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

 

 

Where Are All The Accessible Properties?

31 Thursday Aug 2017

Posted by in Blog, Disability, Housing

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I came back from 10 days away to no emails from the council after our visit there a couple of weeks ago. The friend who is acting as my advocate sent them an email when I told him this, and got a quick reply that I should soon be able to look for private rented accommodation in the borough, then use their scheme to cover the deposit. Ignoring the fact that I should have been sent this information as soon as I had been approved (with J cc’d), the deposit is not what I am having problems with, as my dad has already offered to pay it (a small but arguably fair recompense for evicting me). The problem I am having is with finding suitable rented accommodation in the first place. Heck, it’s what I’ve been trying to do for the last several months! I was told first in June that I’d have to look for private rentals because the council itself did’t have any accessible properties on their books, but I only went through the council because I was having trouble finding any affordable accessible properties in the whole of London; limiting my search to one borough, even to properties that have agreed to house council tenants, seems doomed to fail. I’d optimistically hoped that if Enfield Council didn’t have any suitable properties then maybe they could refer me on to another council that did, or a housing association that the public can’t access independently.  Enfield do have a housing association that works with them, but I’m still waiting to see if I’ve been approved for referral. If I am, then I will have to see if they actually have any accessible properties either. If neither have any, then what?

So where are the wheelchair accessible properties? I’ve found some on general property rental sites during my 8-and-a- bit-month search. They’re generally accessible by coincidence rather than design, and in new blocks of flats that definitely don’t want people like me applying; the kind that have concierges, and pot plants in the hallways. It goes without saying that they are not affordable, even with housing benefit. I could cover the difference for one or two months, and then I’d be out of money and back to square one. It also goes without saying that most properties, accessible or not won’t accept housing benefit, or sometimes ANY:

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Disability Discrimination is alive and well in the UK in 2017.

I suspect the answer is that accessible properties are dying out. The local council used to own many, which got sold off along with much of their general housing stock. The new landlords take out the adaptations, and raise the rent. They can deny installations of equipment needed to help disabled people live independently, and they can evict tenants without good reason just to redecorate a bit then hike the rent up. I haven’t been able to find somewhere to live in almost nine months with a very flexible eviction date, so I don’t imagine I’d do very well with just a month’s notice.Of course, if you can afford to buy your own home and make the necessary adaptations to it, that’s another matter. However, like many disabled people in the UK, I live on disability benefits and am therefore not allowed to save up for a deposit, though I do enjoy imagining the look on a bank employee’s face should I present my financial profile and ask for a mortgage. It seems the wiser thing to do should have been to wait until I had a career, savings, and a mortgage before becoming disabled. Silly me.

Through all this, I am struggling to keep my mental health together. I’ve worked really hard since January’s housing related episode to keep a balance, but when I got the forwarded email yesterday evening, my mood plummeted and I’ve been treading a dangerous line ever since. I can’t seem to engage with the council or think about the process without sacrificing the progress I’ve made since January, and I’m not currently in therapy because the CMHT doesn’t have enough staff to run the group yet (it seems once they’ve decided on the best course of therapy for someone, this can’t be changed due to such trivial things as staff cuts). I’ve spoken to the social worker there before, but she said she didn’t deal with the council because they never picked up the phone, so that’s another line of support cut.

In trying to be proactive, I’m writing this. Angry blogging is my first line of defence. Delegating research to friends who offer help is another. Does the council have a duty of care to appropriately house me, or does their responsibility end at offering me the chance to bid on unadapted properties? How much difference can getting my (shiny new Labour) MP involved make? Or the media? That kind of research. What also helps is that, unusually, I have quite a lot on my plate right now at least writing-wise, but this does rely on keeping the clouds from gathering in my brain. Once I’m fogged with depression, productivity becomes impossible.

Onwards, somehow!

 

The General Election is this Thursday – let’s Crip The Vote!

06 Tuesday Jun 2017

Posted by in Disability, Politics

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Crip The Vote emerged as a digital movement in the first half of 2016 in the United States, and was an active voice leading up to the Presidential election that November. As noted by its founders, disabled people are America’s (and the world’s) largest minority group, but a group whose voice often goes unheard in politics, even on topics which directly affect them such as healthcare, and social services. From its origin as a hashtag on Twitter, it became a movement that spread across the internet and invited disabled voters to participate in grassroots discourse about how they could become more involved in politics and the electoral process. As the disabled community online crosses continental borders, it was only natural that once the General Election was announced on the 18th of April, #CripTheVoteUK soon followed.

It seems incredulous that a movement is necessary to point out where access improvements are needed, but that is part of what Crip The Vote does. This ranges from ensuring polling stations have full disabled access, to pressuring political parties to release their manifestos in all possible formats including BSL and SSE (Signed Supported English), large print, braille, and simplified English. The latter is thankfully becoming more common since Mencap’s campaign to include people with learning disabilities in politics. Some parties fare better than others at inclusion- the Conservative Party released their BSL manifesto too late for postal voters to see it this year.

Inevitably, a large part of the movement is based on drawing attention to parties’ policies which affect the disabled community, and urging people to vote accordingly. For that reason,  many of those participating in #CripTheVoteUK are committed to ousting the Tories who have caused unrelenting misery for disabled people in the UK since 2010 – be it from increasingly unfair ATOS or Maximus assessments, cuts to Legal Aid, NHS service cuts, cuts to disability benefits – disabled people have borne the brunt of the cuts made to keep our economy afloat, while the richest pay minimal tax and hide their money in offshore accounts. (By contrast, Jeremy Corbyn has repeatedly voted against benefit cuts, against the bedroom tax, and for increasing benefits in line with inflation – oh, and making millionaires pay their taxes!) Disabled people in the UK are literally dying from starvation, illnesses worsened by stress and poverty, even suicide after benefit errors, going without care hours when reclassified as being in less need, even being denied the wheelchairs that would help them engage in the community by the NHS who have been told to save money by tightening the eligibility criteria. We are being shat on from all sides, and we are sick of it. That is why Crip The Vote is so important; it gives us some agency back.

It’s hard to write a vaguely objective piece when it directly affects you so much, which is why somewhere in the last paragraph I dropped the formality. I’m not a journalist, I’m a blogger at most, but one who hopes that what they write might one day make a difference. So I’m starting here:
Abled Britons, non-disabled citizens, please read this warning. A vote for the Tories is a gamble, a bet that during a Tory government neither you nor anyone in your close family will become sick or disabled. As long as you remain in a stable job with a good wage, as long as your house remains standing, they have your interests at heart. Once the bricks start crumbling, once you get weaker, once you need to leave that good job to look after a spouse or child, they will not help you. They will punish you for a situation that was not your fault, make you feel as if just surviving another day is political dissent. At times the only thing that has kept me alive is knowing that I do not want to become another statistic, have my death called a “tragedy” by politicians who voted for me to have a harder life. I know my own experience is mirrored by many of my disabled comrades, and I also know it doesn’t have to be like this. This is why we are Cripping The Vote.

(If you want to vote tactically in your constituency to give your local Tory candidate less of a chance, you can check who you should be voting for on this handy website.)

 

My wheelchair is not a prison!

12 Sunday Mar 2017

Posted by in Blog, Disability

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Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”), but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone – look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair…. but they don’t think of the alternative. Before I had my electric wheelchair, I would leave the house once or twice a week, as it caused me that much pain to walk and the knock on effects weren’t worth it. Now, as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple days in a row with only minor consequences.  Without their wheelchairs, tens of thousands of people in this country would have no access to education, work, or a life outside of their homes.
The futon is my prison, and the wheelchair is my freedom and my best friend.
I will admit to getting a bit (extra) depressed from time to time because I miss being able to do the things I used to love – dancing, climbing, scrambling, hiking (basically anything involving going up mountains), kayaking – but what people often fail to understand is that even if I didn’t need my wheelchair, or the crutches I sometimes use, I wouldn’t be able to do these things anymore anyway. The wheelchair is not the symptom of my condition or my limitations, it is the thing that helps me continue to do what I have left. So don’t aim your sympathy at my wheelchair -maybe channel it into anger at the lack of wheelchair access I and other disabled people face instead!