Category Archives: Uncategorized

Airlift

27 Friday Jan 2023

Posted by in Housing, Uncategorized

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

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

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


Equal Access Booking: Good Venues in London

19 Monday Dec 2022

Posted by 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.

the intersection

22 Monday Jul 2019

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

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

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

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

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

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

 

It’s just a saga now.

05 Tuesday Dec 2017

Posted by in Blog, Housing, Uncategorized

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

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

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

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

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

 

 

 

Dirty Tricks

14 Monday Nov 2016

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I came home from 12 days in Chicago to the inevitable brown envelope: my PIP assessment is on November 23rd. That’s under a month after I sent the forms off. Last time it was an 8 month wait so I’m impressed at the speed. However I learnt two somewhat disturbing things from the phone call I made afterwards:

1. In August they quietly “ended the trial” of pre-paying cabs for claimants who needed them to get to their assessment. Instead they now pre-approve claimants for reimbursement and pay them back up to two weeks after the assessment. This means that claimants who cannot afford the return trip in the first place (which would be about £60 in my case for example) are at a distinct disadvantage. Remember that “how did you get here today?” is a commonly asked question to those with reported mobility problems, and taking public transport to the assessment can count against anyone who has claimed they have problems with public transport – even if there is no other way for them to GET to the assessment!

2. I asked if I could have my assessment recorded, after last time when the assessor might as well have written down the opposite of what I said. It turns out they now ask claimants to bring their own recording equipment – good because they can’t now say “sorry we don’t have enough”, but bad because it has to be a very specific type of recording device (dual tape or CD recorder) which most people will not have or many be able to afford. They do not accept any kind of digital recording, as both parties have to have a physical copy of the recording by the end of the assessment. A quick Amazon search shows that dual tape recording devices are not readily available, and definitely not cheap. By insisting that claimants use equipment used primarily in police and court situations, Atos are ensuring that a minimal number of assessments are recorded using a method usable in an appeal. (A covert digital recording would be fine for a claimant to personally review what had happened, but that is all.) One easier to find alternative to the double-tape recorder is to procure two identical single recorders, but again for most people this will come at a cost.

 

I knew already that the odds were stacked against the claimant, but these extra costs and tricks make it extra unfair.

untitled (kicking against the tropes)

26 Monday Sep 2016

Posted by in Poetry, Uncategorized

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I am not a good cripple
I am not brave or inspirational
I was not a courageous child
Nor injured in war

I do not bear my cross with grace and patience
My honesty is unpalatable, humour too morbid
Cousin Helen can go fuck herself
I create uncomfortable silences

There is no yearly event for me
My illness is not marketable
I am not “battling” anything
(It’s a war of attrition)

I am not a good cripple
Sympathy makes me sneer
I have to choke out thank yous
And pretend I don’t resent it

DWP: Disabled Woman, Persecuted.

12 Thursday May 2016

Posted by in Blog, Disability, DWP, Uncategorized

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I had two weeks of breathing easily, knowing I had all I was entitled to.
Two weeks of planning for the future, and not fretting for it instead.
Two weeks of optimism. Two weeks of happiness.
That’s all I got.

It took me 16 months after applying to get my ESA and PIP approved, the latter through a gruelling appeals process. It took another 5 months to convince the DWP that I was eligible for Severe Disability Premium so I could afford to pay for my own care. That fight took more energy than I thought I could ever muster; it could have mentally broken anyone, even if, like me, they didn’t already have serious mental health problems.

Then on Monday I got a letter. The brown envelope.
My rate of ESA is changing in December. Dropping drastically.
A phone call cleared it up:
I am being reassessed for PIP before December 17th, which Severe Disability Premium relies upon me receiving. So they will be taking it away pre-emptively, because they’re so confident they won’t need to reinstate it when I fail to cling onto the desperately needed PIP points. (It’s not even worth noting that my illness is incurable and progressive, is it?)

And just like that, my brief respite is over. My week has been punctuated with crying fits, temper, feelings of hopelessness. I am so scared that the remaining seven months of this year will go much the same as those sixteen limbo months, full of dread, apprehension, self-loathing and despair. I would have dearly loved a longer period of time without this hanging over me.

One week ago I was starting to prepare for the accessible-home-hunt, as things in my family home (which I was only ever supposed to be in very temporarily) are deteriorating. Now I can’t do it- not if there’s a chance I’ll lose PIP, and the Severe Disablement Premium with it. If that happens I’d have to move out again and back to here and that would take more energy and self-esteem than I could ever afford to give.

ever-decreasing circles

11 Monday Jan 2016

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I told the physio I was crying so much because David Bowie died. It was mostly true but there were definitely tears of frustration in there, the same ones I’ve been sobbing out for years at the lack of help.

When I was diagnosed with Ehlers-Danlos Syndrome in the summer of 2014, the letter my consultant from UCH sent to my GP included several recommendations for referrals to help with management of this condition. Finally, I thought, I would get some help. 18 months later, I feel like I might as well have asked a brick wall.

In that letter I was given a strong recommendation to see a hand and foot specialist. My GP tells me they can’t refer anyone, even diabetics to podiatry. As for hand therapy, my physiotherapist says there is a specialist within the trust I’m having physio under but they only accept referrals from consultants. I no longer have my EDS consultant because cuts to NHS funding mean she can now only diagnose patients then discharge them back to the care of their GP. I’ve asked for a general rheumatology referral and been refused because “why would [I] need it?”. I need it because having a specialist is the only way to get help, apparently, and that should be reason enough. (Other recommended referrals were GI and Autonomic clinic, I’m hoping to get to the Autonomic clinic through my cardiologist who I already had before diagnosis.)

 

Hydrotherapy or massage therapy won’t happen in this trust. How can I get them? “Move”, said my physio, sardonically. I’ve warmed to him slightly. He replaced my lovely bright therapist a few months ago and his vaguely dour approach was quite off-putting. He keeps demanding of me what I WANT from physio and “not to get worse” isn’t a good enough answer. However, he says he has a plan and I’m inclined to trust him. He seems as frustrated at the limitations the NHS has put on treatment of chronic conditions as I am.

It’s exhausting to keep fighting the same battles. It feels like I’m going in ever-decreasing circles, chasing my tail, lost in a maze. I know I’m not the only one in this position because of cuts to health services, and it seems incredible that cuts affecting so many people could have been made.

 

In 2016 I resolve to be resolute.

30 Wednesday Dec 2015

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I don’t generally make New Years Resolutions. Every year I just hope that it will be better than the previous year. After a mostly-hellish 2015 I don’t think that will be hard to manage.

This year, however,  I resolve to be resolute. The most useful thing I’ve learned about EDS from healthcare professionals since being diagnosed 18 months ago is if you want good care you have to fight for it yourself. If you get apathetic, you’ll slip through the net. So, in 2016, I resolve:
1. To insist to my GP that I need a rheumatologist. She has refused to refer me twice on the basis that a) I have already been diagnosed and b) I have a pain specialist and a cardiologist already. But when I go to see a GP whilst in the throes of a fatigue crash, EDS never comes into it and I am invariably sent for a pointless “generic tiredness panel” of bloodwork which all comes back fine, wastes NHS money and resources, and doesn’t teach me one bit how to manage in the future with reduced energy and ability.

2. To get an Autonomic Clinic referral, somehow. This referral was one of the things my July ’14 diagnostic letter promised me, along with a GI specialist and specialist hand and foot assessments. None of them materialised once I was discharged back to the care of my GP. When my autonomic symptoms increased drastically early in 2015 I asked for a referral again. Dizziness, blackouts, nausea, random fevers, lack of controlling one’s body temperature – these things aren’t really fun. Then I asked again in October to be told that my cardiologist should be referring me instead. My next cardiology appointment is in MAY. Time to bite the bullet and call the secretary…

3. To stick with therapy (unless it becomes deleterious to my mental health). The therapy my psychologist has recommended to me is Mentalisation. It’s shown to have better results than CBT for patients with emotional instability. What scares me is that it starts off with 6 months of group therapy. But last year I promised myself I would go to therapy, and this is it. I’ve never completed a full course of therapy in my life, except when I was actually in hospital and had no choice, but last year, when the fog lifted from the worst mental health I’d suffered in some years, I promised myself I would go back to therapy and STICK at it and try to make some progress.

Also probably to blog more. Having poor mental health or too much pain generally means that I’m not up to writing long pieces (or even short pieces). This is why Twitter is my medium of choice for writing, to be honest. I can’t get too distracted in 140 characters.

Working as a disabled person, not as simple as just having a job

17 Wednesday Jun 2015

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Millly's Move

In many ways I was lucky, I become disabled whilst I was already in a job, I was able to negotiate reasonable adjustments and stay in the same role. In the last year I’ve had a few more health issues and staying in work has become more complicated. I now need a new wheelchair and a new home.  It sounds straight forward, go to NHS wheelchair services and get the wheelchair that fits my needs and, as both me and my husband work and we can afford a mortgage, buy a home that better fits my needs. Only it’s so much more complicated that that.

A year ago I was referred to Wheelchair Services by the Occupational Therapist I was seeing at RNOH Stanmore whilst inpatient. 6 months later I had an assessment, and found out they don’t provide wheelchair vouchers for powerchair users. Once we’ve moved to a house…

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