It’s just a saga now.

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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.

 

 

 

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

 

 

Reasons To Be Fearful I – People

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Some disability-related writing I was asked to do is going to be published in a national newspaper soon. I’m excited, proud, all of the correct emotions, but I’m also a bit scared. Scared because putting my head above the parapet can draw more attention than I wanted, and the wrong sort.

In 2015 something bad happened. Every socially anxious person’s worst nightmare, and I lived it, for months. Friends unfriending, blocking, ghosting, and worse – being talked about, lied about, with no way to see what was being said. Strands would reach me from time to time, each time more exaggerated or fictional than the last. At my darkest points, I pictured it like a virus infecting every aspect of my social life, every group I was affiliated with (after all, everyone is connected these days). I wrote blog posts in my head daily, of what I could say to try and control the narrative, but always resigned myself with the fact that trying to do so would make things worse. Which is why I’m not doing so now, in fact. I’m still too anxious. But this is where being in the public eye comes in. I started to notice a pattern back in 2015, small but defined. When a blog post was shared around, or lots of people retweeted one of my tweets, I would have a drop in followers. It seems exposure led to a backlash, as some people made it their civic duty to tell others to unfollow me because of what they’d heard . It was hard to swallow, but I would eventually, after months of self loathing, tell myself that people who believed rumours about me weren’t worth having as friends or acquaintances. Sometimes I even believed myself. Even though it’s boiled over, now I’m getting more exposure for activism and writing it’s making me anxious in case it starts up again. The fourth? fifth? whatever wave of it I’m up to now. In a way I feel I’m more able to cope. My friendship groups have comfortable, equitable dynamics, and I’m not going through social destruction at the same time as trying to fight for the benefits I need to survive (2015 was not a good year).  But, all the same, despite being a stronger, more self-assured person these days (at least to an extent), I hope fervently that actually getting a readership won’t lose me friends. I hope the friends I have now know me well enough to know my principles. 

(An alternative take is I Survived Every Socially Anxious Person’s Worst Nightmare and that in itself is amazing, but I won’t lie and say it doesn’t still affect me. I can’t talk about it without crying. I avoid certain venues and events in case of seeing specific people. I can’t make a new friend without trying to work out how if they’re socially connected to anyone involved, and if they could already have heard of me in a negative way. And I am incredibly, incredibly scared of having an argument with any friend, or being read the wrong way. I screen cap conversations that I worry could come back to haunt me, for fear of being gaslighted again. But mostly I’m just thankful that I didn’t give up entirely, or failed in my attempt to, because it did get better. After nearly a year it died down, and I sat in the ashes of my self esteem and rebuilt from the ground-up.)

Where Are All The Accessible Properties?

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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!

 

Why I’m Suing A Bus Company

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I’ll get to the nitty gritty first:
I’m suing a bus company because their repeated lack of enforcing the wheelchair space is making me angry, especially after January’s Supreme Court declaration that bus drivers need to do more to ensure wheelchair users can board their buses. After January things in general got a tiny bit better, and then slowly reverted back to how it used to be – and then it got worse on one route that I use several times a week! Any instance where access gets worse rather than better, in my opinion, needs immediate attention. Since the spring, I have sent numerous complaints to the bus company in question, and each time I get the same response – “we will investigate the driver if we can identify them”, but of course I am not allowed to know the outcome of the investigation. But whatever has happened in said investigations, I see no overall improvement.

The company I am taking to court is based in London. TFL bus drivers can do three things when a parent with buggy refuses to move from the wheelchair space of their own volition. They can play an automated announcement requesting that the space is cleared for a wheelchair user; they can leave their cab to ask the parent/caregiver to fold the buggy; lastly, they can offer a transfer ticket for free boarding on the next bus if folding the buggy is either not an option or not something they want to do. In the numerous instances where I was not permitted to board the bus this year, including four times within two weeks, the most a driver did was to ask a parent to move but did not mention that the space was a priority space for wheelchairs, or offer a transfer ticket. I’ve even had multiple bus drivers claim that having two buggies on at once was an exception and that they couldn’t do anything if that was the case.

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Holding my ground/delaying the bus. This tactic didn’t work.

Despite this, when I am already on board a bus, drivers have no problem letting buggies on to push into my feet and ankles, block mine and others’ exit, or to huff at me when they find they have to fold their giant buggy up because I have unexpectedly occupied the wheelchair space with a wheelchair. It seems like there is a massively uneven system at work, and, by forcing a bus company to address this in court, I hope to further the rights of wheelchair users on buses and public transport.

Lastly, I’m doing this for the wheelchair users I know who are too scared to take buses on their own because they don’t feel that the bus drivers, companies, nor the other passengers have their backs. They feel, unsurprisingly, that they are seen as a nuisance, even though many bus companies have clearly marked priority wheelchair spaces. It’s the co-opting of these spaces by people who then refuse to move or make a big fuss over it which makes us feel that way. I’m doing this because we deserve to use the spaces that disabled people previously fought so hard for.

[I have checked with my legal team, and I’m okay to talk about this case on the internet as long as I don’t name the bus company in question.]

We’re (not) working on it. The council website lies on their behalf.

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“We’re ignoring it.”

It’s nearly seven months since I began the process of applying for housing through my local council and the progress is laughable. Every few days since the start of March I’ve logged into my council account online to check what’s going on with the multiple documents I was made to upload. “We’re working on it”, says the automatic reply. (Remember, I’m applying because I am being evicted and need wheelchair accessible accommodation.)
I tried calling, no I couldn’t talk to anyone because I haven’t been approved yet therefore I don’t have a case worker to talk to. Kafkaesque.
My mental health team’s social worker refused to call on my behalf “because they never pick up”, so that was the end of that route of advocacy.
My friend, however, did manage to get through. I’m in a better position than most “vulnerable people” applying for housing through this ridiculous system, in that I have a number of friends working in relevant sectors – charities, housing groups etc.- and one of those friends got so frustrated on my behalf that they called the council, explained what their job was, and was forceful enough that the council called me back the same day. I should be hearing from a case worker sometime in the next fortnight, though obviously I’m not holding my breath.

It turns out my application has been sitting in some virtual in-tray in a virtual office that no one occupied and had been since January. “We’re working on it” was some placating notice generated automatically as soon as uploads had been received, whether anyone was actually “working on it” or not. [This was further proven when I tried to apply for a taxicard at the start of this month. I got an email receipt saying they aimed to have it done within two working days; it’s been over two weeks now and, yes, they’re still “working on it”. The good news is I can actually call the concessionary travel department on  my own behalf and talk to a human.] I’m starting to believe that council employees aren’t taught how to work the new online system, because that would mean they have to at least try to help as many people as apply for services.

So what now? Now I wait for the phone call from the case worker and try my best not to slip into serious depression over this ridiculous housing situation again. It’s coming in waves, but I’m almost getting used to it.

 

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

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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.)

 

Lost Days – A Post About Hypomania

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[For Mental Health Awareness Week here in the UK, I thought I’d write about something less obviously damaging to those who don’t have to deal with it.]

Like many people with mood disorders, I have marked periods of ups and downs. While it’s true that at the outset, the ups are fun and the downs are terrible, things aren’t so black and white in reality. My own extreme moods tend to last for days or weeks, but some people, such as my aunt who has bipolar disorder, can spend months in such a state – when she is “high” she needs to be hospitalised and have her medication adjusted,  not just to level her mood, but to cushion her as much as possible for when the inevitable rebound low comes. I’m lucky that my own periods of extreme mood are far shorter and with longer periods of relative stability in between,  but my hypomania (as opposed to the full-blown mania suffered by my aunt) still leaves a trail of destruction – money spent, hours thrown into projects I will never complete (or even understand) afterwards, and the inevitable mental fallout… let me give you a typical example, which happened last month:

One day in the middle of April, I received two pieces of good news about my disability activism. I quickly made a happy Facebook post, and enjoyed telling a few friends specific details. Hours later, I was still bouncing with excitement. My mind was making up endless scenarios that could come from this news, leaving me unable to concentrate on anything. I definitely didn’t feel like sleeping, so I didn’t. I stayed up and wrote more. I read Wikipedia before going to sleep for a few hours around 9am the next day. That afternoon I got up, and went on the internet, but I didn’t feel productive and excited any more, I felt uncomfortable and jittery, like I’d had too much coffee. I opened tab after tab “to read later”,  because I couldn’t concentrate. I talked a lot, to myself. The phone calls I was supposed to make were never done, because I felt too anxious to talk on the phone, too anxious even to read all the tabs I kept opening. After staying up all night because I was too scared to sleep when it was dark outside, I took some melatonin in the late morning. Later that 3rd day, I got up and dressed and went across London to see a friend. I felt much calmer due to the groggy after-effects of the melatonin, but when our conversation touched on certain things, I became overexcited and then angry at myself for being so.  Five days after it started, the hypomania fully tapered off and I was on a fairly even keel again, but left feeling disorientated as if I’d been away for weeks and was panicked about what I had left un-done in those few days. The heightened anxiety took a bit longer to abate.

Last month’s hypomanic episode only left me with extra calls on my to-do list, a week of emails in my inbox, and 24 open Wikipedia tabs to read, but there have been much worse repercussions – like a relationship I knew I shouldn’t have entered into. When I lived in France as part of my degree course a few years ago, I got a bit depressed in the last months as I was quite lonely. I started talking to a guy online in London, and the prospect of meeting him made me really excited to be home again. TOO excited. If I had not been so high, I might have considered it a very bad idea to get into a relationship with someone with a serious eating disorder (and in serious denial about it) as well as grandiose ideas about creativity to match my own at the time. But I was high, so at first we were MAGICAL! We made joint art projects, took photographs on London rooftops at 6am, made up songs and sang them in comedy clubs…I felt like together we could change the world (to be honest, that should have been a warning sign). It was a rough ride as I slowly tumbled back to earth, and the thread of anxiety running through our whole relationship started to entangle me, leading to self-harm, self-hatred and self-doubt. Even though that lengthy hypomanic phase introduced me to one thing I still enjoy (comedy performance), it also brought me to the end of my overdraft and left me with the fallout from having been encouraged to diet and to reduce my medications by someone I had idolised. The subsequent depressive episode was the worst I’ve ever experienced, although it was about 5 months until it appeared. Whether its severity related to the long high or not I don’t know, but it felt like I’d fallen miles into the ground after being high above the world for so long.

I often find it hard to tell whether my mood is changing to the extreme. Like last month, a hypomanic episode might start out as excitement, then before I know it it’s taken over and all I can do is ride it out. Hypomania isn’t just “being too happy”, other emotions are heightened – anxiety, annoyance, and impatience are the ones I find also get turned up. Although I’m still working out how to spot warning signs, I am aware of one definite trigger for my own highs, and that is music. I love music – doesn’t everyone? It’s been a huge part of my life ever since someone shoved a tiny violin into my hands when I was 4 years old. These days I tend to listen more than I play, but I’ve learnt to be careful what I listen to. Too much of a favourite band, or a particular album, might set me off and I’ll spend the whole night listening to music, maybe ranking different versions of songs, or analysing scores and lyrics for comparison, as if searching to prove a scientific theory. One night I made several friends listen to “Maria” from West Side Story then Tchaikovsky’s Romeo & Juliet Fantasy Overture to prove to them that Bernstein had used a motif from the earlier piece as inspiration for one cadence within the later song’s chorus. Even if you don’t know music terminology you’ll recognise that that is obsessive behaviour, and that’s something that I often fail to spot in myself until I am too high to come down again – usually I don’t realise I’m in a hypomanic phase until I’m tired and anxious and unable to calm myself (plus stopping to think “Wait, am I high?” before embarking on a project can be somewhat creatively stifling). However, with the help of my partner, who has learnt to spot the warning signs, and friends who have had to learn not to encourage my music-based ramblings, I am slowly becoming better both at managing hypomania, and at nurturing my creativity in a safer manner.

My wheelchair is not a prison!

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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!

Six Wasted Weeks

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(CONTENT WARNING: suicidality mentioned, eating disorders, mental health, unreliable therapists, sleepless rambling)

One day I want to write a post about the housing saga and have it be a POSITIVE one. I really do. Today is not that day.
It’s been 6 weeks since the hospital’s crisis team discharged me back to my regular department. During that handover meeting, my key worker (who I was meeting for the first time) promised me she’d set up a meeting for me and the team’s social worker with the aims of helping me navigate the council’s housing system without such a catastrophic effect on my mental health. The kind that saw a return of bulimic behaviours I haven’t had in 10 years. The kind that had me shaking and sleepless and suicidal in my GP’s office on a Saturday morning three days beforehand, with no idea where else to go to try and get help, desperate to stop myself from doing anything reckless. (Actively trying to prevent the loudest 20% of your mind from taking over the anxious insecure majority is a strange feeling.)
I went home feeling like the cork was just about jammed back into the bottle, aware that it would be very dangerous to let the pressure build back up again.

So, since then I’ve waited. For six weeks. In the meantime having no luck with my other housing options (see previous post). Mental health up and down, nothing as bad as it was when the crisis team had to get involved, because of the aforementioned cork keeping my distress gently bubbling away on the inside. Literally holding out for the help I was promised.

Today I left a voicemail with my key worker, chasing this up. Two hours later the social worker called. “K has just told me about your situation….”
I had to ask her if she meant “…for the very first time”. Yep –  Just. Told. Her. 
If I hadn’t called, how long could I have been waiting for this meeting? I have a horrid feeling the answer would have been indefinitely.
If I wasn’t so tired I’d be absolutely furious. I AM absolutely furious, but the tiredness means it’s coming out as defeatist sighs and the frantic need to write this all down before I fall asleep at the laptop.
I’m pretty sad too, though. I don’t find it easy to trust people, psych professionals even less than most, and I’ve already lost a huge amount of trust in my new key worker. I know that mental health services are getting cuts all over the place, everyone’s so busy and overworked, and she probably genuinely forgot. The problem is there’s a human impact on the other side of the safety glass. My life can’t be put on hold right now – I’ve wasted 6 weeks waiting, and my provisional deadline to move is now a month away.

The social worker said she would text me some potential meeting dates. I’m not letting myself hold out much hope of that without another prompting phone call. I’m also very glad that anxiety over being forgotten about is overriding anxiety about making phone calls right now.