Tag Archives: disability

Being the football.

27 Thursday Jun 2024

Posted by in Disability, DWP, Politics, Uncategorized

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With a general election happening in a matter of days now, it is with utter predictability that Rishi Sunak – the presumably outgoing Prime Minister and multi-millionaire married to the daughter of a billionaire – is throwing out some lazy appeasements to the taxpayers/dodgers in an attempt to claw back some of the former Tory voters who’ve wandered over to Reform or Reclaim or any of the other loony fringes of right wing populism. As ever, benefits are a popular way for the Tories to direct their voters’ focus onto easy targets (the unworking! the useless eaters! the single mothers!) and this time it’s PIP (Personal Independence Payments) that is under scrutiny. PIP is a benefit that anyone can get, working or not, with savings or assets or not, as long as they are disabled enough to qualify. It has two components – “daily living” and “getting around”. Someone getting the maximum of both components who isn’t using the mobility portion to lease a car via Motability (the “free car” legend still lives rent free in some heads) will be getting just north of £700 a month at time of writing. However, from the “man on the street” interviews some media have done it appears that the general public don’t know much about it, as in the ones I read and saw many people mentioned how Sunak’s proposed changes will “encourage people back into work”. Maybe we should encourage people to research the subject before opening their mouths. Anyway, I’m preaching to the choir here I know, but without PIP many disabled people wouldn’t be able to work in the first place, without help to cover the extra costs involved in getting to and from work and managing throughout the working day. Because that’s what PIP is for on paper – levelling the playing field by helping with the extra costs of being a disabled person in the UK. These costs are ongoing, because our disabilities and conditions are ongoing. Which brings us to the takedown of the shakeup:

Scheme 1 – ONE OFF PAYMENTS:
The first of Rishi’s ideas to possibly replace PIP is one-off payments for adaptations. Here’s a radical thought: these should already be a thing. Not instead of PIP, but on top. Currently, disabled people can apply for grants via their local authority for help towards ramps, stairlifts, door widening etc. but this is means-tested and takes into account the income of partners as well as that of the disabled person themselves (and is why we don’t have a level access back door yet.) I’m sure if the one-off-PIP was introduced, some people who don’t qualify for such grants would appreciate the ability to make their home as accessible as possible – there, I said something nice about it. However, what good will that do the many people who live in homes that have already been adapted? Would we get money back for works already paid for? Most importantly, there are many people who qualify for PIP who don’t need any home adaptations at all, and it once again feels like mental health, neurodiverse and developmental conditions are being ignored in the name of cost-cutting. Of course, the big issue with the idea is that one-off payments, even if they help with the costs of adapting homes for those who need it, won’t help with covering the ongoing costs of disability and chronic illness be it taxis, extra use of water/heating/electricity, private therapies etc. that PIP is supposed to be an equaliser for. If they’re truly one-off, they also wouldn’t cover later necessary adaptations – say, for someone who uses a walker and can manage with grab-rails and a stairlift, but later uses a wheelchair which needs a ramp to be able to enter the property. Also, since this would still be managed by the DWP, I imagine applications would still be scrutinised by unqualified assessors who will turn a good number of them down. Plus ça change. So, my verdict on payments for adaptations is that they’re a good idea on paper, yes, but only as an adjunct to the existing PIP payments, not as a replacement.

Scheme 2 – VOUCHERS
The idea of benefits being paid in voucher form is a longstanding favourite of many who complain about benefits being a “lifestyle choice”. It’s a popular topic for below the line discussion about most benefits, such as Jobseekers Allowance and ESA (but not the state pension, never the pension). The commenters in these cases seem to think that anyone claiming money from the state has a responsibility to only spend it in a way that they, The Taxpayer, explicitly approve. This, of course, means no cigarettes, alcohol, Sky TV (the classic combo)… or in 2024 terms no vapes, no takeaway coffee and no Netflix. This kind of thinking starts with “no luxuries allowed” and ends with “you can survive on beans on toast”. In a pique of irritation with this attitude, I may once have ended up telling someone that it was no matter to them if I spent every penny of my benefits on pick & mix and then found myself unable to pay my rent! As a way of breaking down the problems inherent with the voucher idea, I’m going to see how it would hypothetically handle a few things my own PIP is spent on currently and in the past. So first, non-prescription medications and supplements: I take a lot of these, so for cost saving measures I tend to use Amazon as the alternative is spending an eye-watering £210 a month on Co-Enzyme Q10 alone from Holland & Barrett (my cardiologist continues to apologise that it’s not available on prescription “but please keep taking it”). Would this voucher system let claimants buy products online, and if so would it limit them to “approved” retailers such as supermarkets? Many recipients of PIP cannot get out to the shops to buy things they need and rely on online shopping for everything from groceries to personal care products. Then there’s the matter of paying others for the things we can’t do ourselves: I didn’t qualify for council care, so when I lived alone I hired a friend to work as my PA. He would come over for an evening most weeks to help me blitz the laundry pile, hoover the floors, tackle the kitchen chaos and make sure I managed to have a bath without passing out either during or afterwards. I paid him by bank transfer, but if PIP were given in vouchers or pre-pay card format then presumably it wouldn’t see a bank account at all. And now, although this is something I keep meaning to expand on in another post, now I live with my partner in a house of our own – and as a result, PIP is the only income I have, the only guaranteed money coming into my account. It is how I pay for my share of the food, and the bills. I will argue until I’m blue in the face that this too is a cost of disability, because I can’t earn a salary and my ESA has been stopped for the crime of cohabiting. There are many disabled people like me, who find themselves with drastically stripped down benefits after making such a move, and for this reason PIP in vouchers or one-off payments would be a disaster for us. How can I contribute to my household if my sole income comes in voucher form?

So here’s the thing – Rishi Sunak is unlikely to remain the Prime Minister after this election; all signs point to Labour regaining the higher ground and Keir Starmer taking the reins. This means that Sunak’s statements about shaking up the disability benefits system will likely come to nothing. However, I feel that after 14 years of Tory cuts and scapegoating of benefit claimants (disabled or otherwise) that things aren’t going to be much better under Labour, or anyone else. It’s a depressing thing to say, but I feel the best I can hope for after this election, as a disabled person on benefits in this current climate, is that nothing changes – not because the current system is a just one, but because in my experience as someone who first claimed (what was then) DLA in 2004, change to the benefits system has been progressively more weighted against those who it purports to help. Maybe I’m just feeling mentally and emotionally drained after seeing my “lifestyle” (ha!) tossed up and thrown around like a political football, dissected in newspaper articles and op-eds, discussed in fabricated detail by people who wouldn’t recognise chronic illness if it smacked them in the face, let alone spent weeks unable to leave the house* because of it (*not during a global pandemic). Underneath my fear and weariness, I do realise that these PIP changes are most unlikely to happen and that Labour are similarly unlikely to want to do an overhaul of the benefits system – at least one to the wider detriment of the people who use it. The problem with being the subject of a political football, though, is that even if it only ever remains outlined in speeches and articles and never even gets close to scoring, you still feel rather, well…kicked.

The Accessible Home Project pt1: The Stairlift

09 Wednesday Aug 2023

Posted by in Blog, Disability

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We have a house. We own a house. I’m still reeling a bit at that fact, and also at the sudden financial necessities like replacing the old immersion tank and getting someone in to look at the spare room to find the cause of that weird smell (is it damp? is it coming from the loft we can’t get into because there’s no ladder?). The costs I was anticipating, though, the ones we knew were coming from the start, are the ones needed to make this lovely little house into one I can live in independently and safely. Before we decided to buy this house, before we decided to buy a house as opposed to any other type of residence, we knew there’d be a number of costs involved to make it suitably accessible. While looking for a home to share together we quickly had to scrap the dream idea of a bungalow as the only ones within reasonable walking/rolling distance of the city, although stunning, were 100k out of budget. We did find one right by the city on its own large plot of land, but we had both decided we’d like some neighbours, and couldn’t take on a fixer-upper either. Neither of us are particularly skilled at home renovations, for my part not even those that can be done from a seated position! Flats, too, quickly disappeared from our searches. Older more characterful flats were invariably not wheelchair accessible from the street, and the affordable newer ones too small – plus we worried about noise issues and lifts breaking, both things notorious in apartment buildings, not to mention increasing service charges. It made more sense to buy a house and spend a lump sum of money making it suitably accessible to last the next 10+ years than to pay increasing charges year on year for somewhere that wasn’t our first choice.

So what needs doing? The list has three major things, and a couple of minor things that we can mostly buy/install ourselves. Of the majors, the stairlift was the obvious priority, followed by replacing the back door with a level access one as my wheelchair takes up most of the width of the front hallway at the moment. Installing a downstairs loo and shower room in the current cloakroom is a much larger and more expensive project so will be done last. After making enquiries, we were cautiously optimistic that Richard, the lovely surveyor from Norfolk Stairlifts, would approve our creaky wooden stairs, as the previous owners told us that there’d been one installed when they bought the property, so we knew the stairs had fit one at some point. Soon after our home assessment I visited the showroom and tried out the suitable model of stairlift for very narrow stairs, and one with the manual swivel mechanism that our equally narrow landing demands if I want to avoid constantly bashing my knees into the wall. It’s going to be a tight fit for both me and for anyone using the stairs, but it can be done. I’d been managing the stairs for the month since we moved in, but it was difficult and causing some painful and sleepless nights. It’s also no fun rationing drinks to avoid having to go upstairs to the loo too often, then sitting down for a wee on screaming hips with a heart rate of 110.

The stairs soon after we moved in (you can just about see my wheelchair charger at the bottom!)

The very good news about the stairlift is that it was about half the cost of what we’d thought it would be as we didn’t need a curved rail, so I could pay for it myself without needing any contribution from Chris for something that he won’t use and will probably find himself infuriated by at times. The less good news about all our access renovations is that we don’t qualify for any help towards costs. I plan on expanding on this in another post, but the council’s Healthy Homes scheme approves financial aid primarily based on receipt of certain benefits and I lost all hope of getting back on ESA when I moved in with a partner because [rant about the system saved for other post]. To decide eligibility without these benefits, they look at income; again, both mine and his. I didn’t think we’d stand a chance based on his income, but at least I have enough in those savings to cover the stairlift and maybe half a door largely thanks to Arriva London Buses. I might even be able to keep my Emergency Wheelchair Fund untouched, which would be ideal as my current one is slowly rattling off this mechanical coil. I do find it frustrating on his behalf that Chris is having to pay for some of the access fixes, but at least he will use the back door and the downstairs bathroom. Despite his reassurances I’m still trying to swallow the Disabled Partner Guilt (which, again, is for another post).

The stairlift is being installed as I type. I’m marooned upstairs while this is happening as Ronnie, the technician, needs the stairs clear for all his equipment and we only have the one bathroom for now. Chris has escaped to work in the coffee shop to avoid the noise and disruption but it’s not been too loud so far (I can always put my headphones on). It takes 4-5 hours, which seems a very long time, but everything has to be measured and done so precisely (conversely, I’m told it takes under an hour to remove a basic straight stairlift!). A few hours doing chores from bed is a small price to pay for years of better accessibility in my own home!

Update:
The stairlift that best suited my needs is a Handicare 1100. It’s very slim and the rail sits relatively close to the wall which leaves just over half the stairwell free for pedestrians. The rail is straight because the hallway and landing are also very narrow (as in most Victorian terraces) so I find it best to use the external remote control to move the chair a few steps up after I’ve come downstairs or else it gets in the way of the kitchen door. Once I’m at the top or bottom of the stairs, I pull a little lever under the seat to swivel the chair around (using the bannister to push myself) so I can get off. There’s a little switch under one arm to raise or lower the footrest, and there is a seatbelt which they recommend is used (but won’t revoke the stairlift if you don’t). There’s also a key which you can use to lock it, meaning when our toddler nephew visits he won’t be able to take himself for a ride on Auntie Nina’s Fun Chair. We were very happy to find that the stairlift would not come into contact with the two plug sockets at the bottom of the stairs – there was no need to drill through into the kitchen, and I can still use the second socket for charging my powerchair until we make it a base in the utility room. It’s not too noisy either, just a droning hum that sounds a bit like electronic bagpipes to my mind! It would be quieter if we had carpet, but we’re not sure we want any carpeting in the house yet let alone on the stairs – Ronnie tells me that he’s worked a few jobs installing complicated stairlifts when the client casually mentions they’re getting the carpets redone in a month! I promised him if we did get carpet it would just be a runner. We have 101 more things to get done before we even think about the stairs anyway.

Here’s what it looks like in our house:

Now, onto the back doors – and the never-ending task of choosing paint colours!

Trains in the Netherlands – outsourcing wheelchair access.

29 Monday May 2023

Posted by in access, Disability, Travel, Uncategorized

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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 to a specified point on the platform. 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 booking system – we were not allowed to book assistance for a particular platform at Amsterdam when we tried to work around the lightning-struck routes on our first day, 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, as I’d used that one to leave the platform when we arrived, but there was no way to explain this. In any other setup I would have gone and talked to staff at the station, but in this system where the ticket office and train staff have nothing to do with the access I don’t think it would have made any difference.

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, after all what disabled passengers really want is independence.

If you’re a wheelchair user planning on using trains on your trip to the Netherlands, I’d definitely recommend setting up an account on their national railway network site at https://www.ns.nl/en so you don’t end up having to do it in a panic like we did when trying to book ramp assistance. You can only use the ramp booking service if you have an account, and you also need a Dutch phone number before it lets you book (which it doesn’t need to verify, luckily, but I assume this is the number they’d call if they can’t find you at the rendezvous point) so to get around this you can either get a Dutch SIM, make one up entirely like we did, or if you have any friends there see if you can use theirs!

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)

Donmar Warehouse

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

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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

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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

Posted by in Disability

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

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

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

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

 

Disabled facilities are not storage spaces.

14 Saturday Apr 2018

Posted by in access, Activism, Disability

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“Disabled facilities are not storage spaces.”

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

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

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

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

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

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

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

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

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

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!