Benefits Update

A full 16 months after I applied for ESA, I’ve finally got an answer. I’ve been put in the Support Group which basically means that I don’t have to work or seek work because I am too ill and disabled to be reasonably expected to try to find work that I can feasibly do and employers willing to make the many, many adjustments that would be required to make that work accessible to me. After literal years* of financial insecurity due to disability and ill health (including times when I had no money of my own) I finally have something resembling security – money to replace the employment I cannot be reasonably expected to seek or find until and unless I get much less ill (unlikely to happen as my physical illness is chronic and incurable and my mental illnesses are chronic and not responding all that well to treatment) or society gets MUCH, MUCH less disablist and much, much more inclusive and accessible (more likely to happen but still years away). I view it as somewhat akin to compensation – money to live off in recognition that between my body and the society I live in paid job opportunities for me will be close to non-existent but I still deserve to live a good life.

So, what now?
I’ve bought quite a few things lately that I’ve not been able to afford for a very long time – a mobile phone that actually works, a winter coat, new shoes, a Blue Badge and a Disabled Person’s Railcard. It feels odd both to have these things and to know that I can buy such things without worrying about whether I can also afford to pay my rent. This security is unfamiliar to me, I find myself still acutely aware of when each payment is due to come in and when my rent and direct debits are due to go out.

As I don’t need to look for or get a job, I’ll have a lot of free time. I’ll definitely be blogging and I’ve got some great ideas for posts lined up. I’m trying to get back into reading regularly and I want to write more fiction. In fact, I have the slightly ambitious aim of writing the first draft of a novel this year (I’ve written novels before but not since my teens). I’m also looking for very, very part-time volunteer activities in Manchester feel free to contact me if you’ve got an opening you think I could fill 🙂

In the medium term, I’m on a few NHS waiting lists to hopefully get some treatment for my my mental illnesses. I don’t expect to be “cured” but there’s a lot of scope for improvements in managing my illnesses and maybe even reducing my symptoms. A man can hope, right? Learning how to make a phone call without breaking from fear and panic, for example, would greatly improve my life and it’s a goal that is ambitious but (I hope) achievable.

Even longer term, I want to be a parent. I’m hoping to be on the adoption register as a potential adopter before I’m thirty. In order to get there, I’m going to need a few things I don’t have yet: a permanent home with at least one spare bedroom, more local friends than I have now, possibly a wheelchair and/or a service dog. I’m not hugely sure how to go about getting these things sorted but not having to worry too much about continuing to afford to eat and pay rent frees up a lot of time and energy for planning the little steps to the bigger goals. And I know what my big goal is: to be a good parent to at least one someone who didn’t get a great start in life.

So, that’s where I am. Right now I’m still pretty poor compared to most people but I don’t have to worry too much about it any more cos (for now at least) I know that I will have a regular income and that my rent will be paid. This means I can concentrate on other things. Which is something I’ve not been able to do for a long, long while.

*I’ve been trying to apply for DLA / PIP and ESA since 2011, the present year is 2015.

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Social Care Update!

In my last really personal post, I talked about how reablement services can be (are) really abusive and gaslight-y and how I was told that my care needs had been found to be “moderate” rather than “substantial” or “critical” so I was to be left with no care and no support to find any… Well, I was very brave and I complained to the council. I was prepared to fight, to take it right to the top and get the press or my MP or the Care Quality Commission involved if need be. The council saw that my complaint was very serious. They reinstated my reablement care and appointed me a different and more senior assessor who listened to me and took my (quite severe) mental health problems into account.

Quite a lot more was written onto my new assessment form. A support worker came to my assessment to help me talk about the very difficult and distressing details of what care I need and why. My new assessment, full of details about my mental and physical ill health, was taken back to the council and I was (finally) awarded long term care.

From the beginning of next week, I will have people making sure I eat and wash and look after myself. I’ll even have someone to come round and help me keep my bedroom tidy. With the assurance that I will be prevented from neglecting myself with regard to these basic needs, I feel like I have a foundation upon which to base myself as I try to build a life in my new city. Knowing each day that I definitely will eat an evening meal and when that will be, keeping myself and my surroundings reasonably clean, with these things taken care of I can do anything – write a novel, get a voluntary job, survive the therapy waiting list, go to social events… maybe even get on a bus to somewhere I’ve never been. Without support, those basic needs quickly stop getting met and I have no foundation on which to build a life of new experiences, of practising and learning old and new skills, a life in which happiness is not a fleeting dream but a real possibility.

Less than a hour’s support a day makes that much of a difference to me. Without it, just surviving is incredibly difficult; with it, a life full of wonders becomes possible.

When your council next cuts support for adult social care, as councils regularly do, think about me. Less than £10 a day of council money is for me and many others like me, literally a world of difference.

I write best when I’m hurting…

TW: this post discusses social care, “reablement” services, mental illness including self-harm and suicidal ideation and institutional neglect and abuse of disabled people, particularly of me. Stay safe and don’t force yourself to read it if it could harm you.

I sometimes feel I write best when I’m writing about what hurts me. This blog is full of post about my experiences of living with chronic disabling illness and of living in a world that reminds me over and over again that people like me – whether that’s disabled people, trans people, Jews, LGB people or unemployed people – are not wanted or welcome. I write about what hurts me.

I’m hurting right now and haven’t posted in almost a month. What’s happened?

I am being harmed. I am being abused. I am being… “re-abled” by social services. And they’ve decided i don’t qualify for on-going care. That means my care hours, as of tonight, will be cut to ZERO and any care I need I will have to organize and pay for myself – if I survive long enough to sort something out. (My friends and partners are not going to let me die so don’t worry too hard but I basically cannot be safely left alone for more than three DAYS without completely giving up on caring for and feeding myself. An otherwise identical person with no local friends would be dead or hospitalised within a month with malnutrition. I really wish I were exaggerating here).

For the majority of people who’ve never heard of it or had to go through it, “reablement” is an up-to-six-week long assessment period in which care is provided to a person and (in theory) they are given the equipment and support they need to look after themself. On paper, it looks like sort-of a good idea BUT in reality, huge funding cuts mean people aren’t being given as much equipment as they need, are fighting hard and waiting weeks to see that equipment and are being assessed as needing (as I do) about 5 to 6 hours of care a week THAT THE COUNCIL THEN REFUSES TO PROVIDE OR PAY FOR. And even if all the equipment I could benefit from were provided to me, even if I were given my five hours a week ongoing care to keep me alive… the process of reablement is still neglectful and abusive BY DESIGN.

The people sent to support me were deliberately and secretly instructed NOT to help me and to push me to do things by myself. My every morning wash and evening meal was secretly turned into a battle of wills between me, an exhausted mentally ill person in a lot of pain and a carer / support worker who was often meeting me for the first or second time. They pushed me further than I should safely be pushed and they pushed me every day. And I capitulated and forced my pain-filled exhausted limbs past my limits daily *because when I am scared or upset, my PTSD makes me extremely compliant*. I repeatedly tried to explain to both carers and my assessor that I am exhausted and in pain and vulnerable and that whilst I often physically *can* make myself a meal, I usually really, really *ought not to do*. I tried. My concerns were frequently ignored and now I have no care, not all of the equipment I was promised and a fight on my hands to stay in an abusive system in the hopes of getting less than a MP’s meal allowance a day spent on keeping me alive and healthy enough to do anything at all beyond surviving.

My depression and PTSD have been getting very bad lately and is it any wonder? I’ve been seen by carers and by my assessor in tears and self-harming. I’ve had to get friends to help me in the last few weeks because several times a day I think in all seriousness “I want to die just so all this stress and abuse will end”. Things are literally that bad but for the sake of a few quid the council would apparently prefer to let me try to look after myself alone.

And it all links back to the questions on the PIP and ESA forms that apeear in my letter box at irregular intervals and the number of different GPs who’ve happily signed my sick notes yet the DWP still want to get Atos or Capita to assess me in case all 6 GPs were wrong and the comments of the likes of Lord Freud who thinks people like me shouldn’t be paid minimum wage but also shouldn’t be able to live off benefits… it all comes down to having to fight and plead and abase myself daily to show that I deserve to live. It all comes down to narrating over and over and over again how my illnesses and disabilities affect me and how many doctors I’ve seen and getting professionals to write down exactly what I just said on pieces of paper that other professionals may or may not take into account… Will I be deemed worthy, fit for life, this time? And if so, for how long?

Ten things they don’t tell you about life with chronic physical and mental illnesses

I live with physical illnesses that cause chronic (ie long term) pain and fatigue. I also have several mental illnesses, including depression, anxiety and post-traumatic stress disorder. For all of my adult life, I’ve been regularly seeing doctors and counsellors and therapists and physios and nurses and social workers… all of them somewhat aware of my long lists of diagnoses and treatments. Here’s the important stuff that none of thought to tell me:

1. Becoming physically ill from a mental illness or mentally ill from a physical illness is really, really common.

PTSD can cause chronic pain. Chronic pain can cause or further exacerbate depression. Depression usually comes with anxiety. Chronic fatigue and pain are common symptoms of depression… Basically, human brains and bodies are complex systems and disruption in the functioning of one part will often have repercussions elsewhere. I am not, as I’d feared, somehow especially weak and unable to cope with one illness without developing more – I’m experiencing something fairly typical for people who live through certain kinds of trauma.

2. The brain is a part of the body and mental illness can be whole body illnesses. Likewise, whole body chronic illnesses like fibromyalgia and ME can and do affect the brain and so the mind

While medical professionals talk of me having several different illnesses (with overlapping symptoms) it often makes more sense to think of my mind and body as experiencing one great big illness that sometimes needs tackling at the level of its component parts and sometimes needs to be treated as a whole. Sometimes fatigue and pain and despair need to be tackled as just that, without worrying too much which part of my illness is causing them right now.

3. Being chronically ill, mentally or physically or both, makes it really, really difficult to tell when you’re acutely ill and need to see a doctor
When you wake up feeling like you have the flu every day it gets kinda hard to tell when you actually have got the flu. When nausea, weight gain and a tremor are all symptoms of your illnesses and possible side effects of your medication, it’s easy to ignore them when you should maybe get them checked out (I eventually did, got more pills for the nausea, some disapproving looks about the weight gain and a diagnosis of “benign essential tremor” for the shaking).

4. There is no surefire way to determine whether you’re actually really tired from fatigue or demotivated from depression

The only way to find out is to try to do something, if it hurts and you get post-exertion malaise, it was probably fatigue

5. Depression and anxiety can physically hurt; fibromyalgia and ME can make you cry with fear, pain, despair or anger

6. You cannot deal with only one illness at once, even if that’s how doctors, the dwp, your family and, well, everyone else, seems to think you should deal with it

PTSD flashbacks can steal lots of energy. So can strong emotions from depression and anxiety. Panic attacks can hurt and make your fibromyalgia flare up unexpectedly. Depression will use your new slower, sleepier pace of life against you to call you lazy or insist that other people are talking about it behind your back. Self-harm becomes easier than ever when your body feels pain at every touch and missing a dose of painkillers can guarantee agony. My body and mind are experiencing massive malfunction and problems in one area cause problems elsewhere. Most of my treatments are just fire-fighting as problems spring up everywhere.

7. People will try to tell you you’re just mentally ill or that you’re not mentally ill
Both assertions are unhelpful and reductive. You are ill, both your body and your mind are affected. It’s not your fault but you can’t treat just the body or just the mind and expect the problems to all go away.
8. The illness(es) you’re experiencing is not your fault
No one has ever said this to me and I’ve often wished they would. I didn’t do anything to deserve this – and if you’re ill too, you didn’t either.

9. “Incurable” doesn’t mean “It will always be exactly as bad as it is right now”

I really, really wish someone had explained this to me and I hope you remember it. There’s a huge, huge space between “how bad it is right now” and “how well people generally feel”. Incurable just means you will never get (back) to “well”. You can and will live in the space in-between. You can feel better, you’ll just never be well. I know that still sounds really difficult and scary but it’s more survivable than “I will feel this awful forever”. Mental illnesses like to extrapolate futures full of acute awfulness and I am telling you that’s not quite how it is.

10. A surprisingly large amount of pain and suffering is survivable and can become a “new normal

I know this doesn’t sound like much of a positive but bear with me. As well as medicating my symptoms, which lessens my pain / fatigue / anxiety / panic / despair / involuntary thoughts but never stops them entirely, i have found that as the years go by, previously unendurable symptoms start to seem like normality: like how music and chatter in a shop can fade to background noise. With no real choice but to get used to pain, fatigue and involuntary thoughts, I have settled into accepting levels of all three that would previously have brought be to tears.

 

And one extra:

11. It IS really and truly possible to be happy *and* ill.

I am happy. I love myself, I love my friends and family and, yes, I love my life. I can’t always keep ahold of the knowledge that there is more to my life than pain and fear and fatigue and despair, but I often can and then I am happy. It is possible. I wish someone had told me that. It’s possible to be okay- and more – whilst living with multiple illness, physical and mental.

What does “depressed” look like?

People often say things to me that imply that they can’t quite manage to believe that I have depression. Sometimes they outright say that I don’t have depression or say “But how can you have depression?”. Sometimes people react with shock or suspicion or by immediately assuming that I have very mild depression. More recently, I’ve noticed that when I talk about my depression, people reply as if I’m talking about something that happened in the past. They ask “What was it like?” “How did you cope?” and even “How did you get over it?” instead of “What IS it like?” and “How DO you cope?” and “Do you think you’ll one day get over it?”
I talked to some other people with chronic mental health problems and this weird tense-slip thing turned out to be a common experience.

I have had depression for over a decade. It’s been a major part of my life since childhood and if you think on that a minute you’ll have to realise that almost everyone who knows me in real life has only known me with depression. I’ve been depressed longer than some of my siblings have been alive. And I’m still depressed now. People often find this information hard to process because, well, they’ve got this image of depression in their heads and most of the time I don’t look like that. Depressed people are supposed to, say, cry a lot. Or repeatedly say “Oh I’m so depressed”. Or have visible physical scars or a very public crisis in which either a kind stranger, a good friend or men in white coats have to step in to rescue them from their own self-hatred. I don’t look like that. I look, well, normal.

Sometimes depression looks like me.

Sometimes depression isn’t so much crying and crisis and self-hatred as it is a near-insurmountable inability to motivate myself to do or enjoy anything. Without significant support from other people, I don’t eat or wash or get dressed or go out. I’m not sure exactly what it is I actually do but getting out of bed, going to bed and everything in between are really, really difficult for me to do – not in and of themselves but because I have very little motivation. I literally bribe myself, coax myself and if need be force myself to do these normal every day tasks that are required for Staying Alive.

Sometimes depression involves having difficulty concentrating on things and paying attention. So I find myself really, really wanting to understand what I’m reading, watching or hearing and just.. not doing. Repeatedly.

Sometimes depression isn’t so much not liking myself as it is thinking that I am an amazing, wonderful person… but it ultimately doesn’t matter because I’m never going to achieve much if I can’t even keep myself fed and dressed. I know I’m awesome but I feel unable to do anything much to show it. I feel like I don’t contribute enough to my friendships and relationships. I feel like I neglect my activism and my writing. I wonder why anyone likes me when I could do so, so much more to deserve it.

Sometimes depression looks like avoidance.  I stopped seeing many of my friends a few years ago. I still love them dearly but am terrified of trying to reconnect in case they resent the distance I allowed to grow between us. I love my younger siblings but am scared of being a disappointment as a big brother because I disappear when things get bad and only reappear when I’m fairly sure I won’t somehow mess things up. My inaction causes the very thing I’m frightened of to happen and I sort of understand it but I still can’t find my way past the fear and hurt to reach out to those I love.

Other times, it can look like recklessness. I impulse buy things – usually small cheap items of food or jewellery to make myself feel better. I can afford to right now but I still find myself doing it when I really shouldn’t. They make me feel better for a while but are usually followed by guilt. I feel bad for daring to want to feel good.

Sometimes my depression even looks like success. When I was at my worst with my depression, I rarely cried in public but I did write two novels and hundreds of poems, pass nine GCSEs and four A Levels and share a rich and deep friendship and imaginary world with some wonderful people.

My depression waxes and wanes but it’s never really gone (for a few glorious months once I thought it had and then I had a sudden and unexpected breakdown). It mostly manifests as I’ve written before as unwanted thoughts and even dialogue inside my head telling me that I’m bad and worthless and exhausting me so I can’t always remember that i disagree.

I think I’m actually pretty amazing. My friends and partners and family think so too. I’m struggling right now but I tend not to look like I’m struggling; because most of it goes on inside my head, because I have adequate support to keep me fed and clean and dressed, because I push on and do difficult things like talking to people and leaving the house because I want to be a good friend, a good partner, a good brother.

This is what depression can look like. It can look like a charming, smiling, sociable, intelligent young man with lots of friends and people who love him. It can look exactly like someone “twitter famous”, a well-known and well-liked blogger. It can look exactly like a clean, well-dressed, knowledgeable acquaintance at a party.
Depression can look exactly like someone like me.

Which is to say, depression can look like anyone. It’s not something you can see.

When Phobias aren’t Phobias

It’s been awhile since I did an autism focussed post and recent conversations have made me think pretty hard about something. About my childhood phobias that weren’t and aren’t phobias at all.

As a child, I was afraid of animals. And insects. And people. And the vacuum cleaner.
As an adult, I am afraid of… most animals, most insects, new people. And, yes, the vacuum cleaner.
These aren’t phobias. Phobias are irrational fears of things which cannot hurt you. I have a phobia of heights but my fear of, say, chickens isn’t a phobia because it’s a rational aversion to something that can and has hurt me.
What’s this got to do with autism? The reason my fear and avoidance is rational but looks irrational is based in my neurology. What I am afraid that animals and insects and people will do to me is touch me. Some textures hurt – especially when I’m unprepared for them. What else I am afraid the vacuum cleaner, insects, animals and people will do? I’m afraid that they’ll make noises at me. Some noises hurt me. Noises and textures that don’t bother my neurotypical peers are EXTREMELY distressing and/or painful for me. 

Add to this that I took many, many years longer than my typically developing peers to get a basic grasp of human body language and have only very, very recently come up with working models for cat and dog body language. I essentially spent my childhood surrounded by things whose behaviour seemed inherently unpredictable which were prone to nonconsensuallly touching me, suddenly making noises at me and moving in and out of my limited range of vision at what genuinely appeared to me to be random. Avoiding any and all people and animals I did not know looks like a perfectly understandable reaction in hindsight.

I now have the vocabulary and knowledge to articulate to myself and others that I’m not scared of spiders so much as I’m afraid that they’ll walk on me, I’m not afraid of flies but will have a meltdown if a buzzing one is in the same room as me etc. I couldn’t articulate this as a child because I’ve had these sensory sensitivities since long before I could speak. They hadn’t yet developed into fears and aversions but what happened when I cried in pain from a noise or texture that wouldn’t hurt neurotypical people? The neurotypical adults around me understandably misinterpreted my cries as fear and reacted by trying to reassure me that “Flies / puppies / vacuum cleaners can’t hurt you. It’s okay. Don’t be scared”. So when I later was able to speak, how did I describe what was happening? I used their words back at them and said “I’m scared of flies”.

Flies can hurt me. They do. They have done my whole life. It hurts when they walk on my arms and when they buzz. It’s perfectly rational for me to be afraid of things that hurt me.

Through learning how to predict the behaviour of dogs, cats and other pets, I’m no longer scared of them. People, I can sort-of understand and at least they usually back off if I yell loudly at them for touching me. Insects I can live with if they’re quiet.

And vacuum cleaners? I still can’t be in the same room as one in use. And that’s okay.

The Obligatory Year-In-Review Post

TW: mental illness, disability benefits

It would be far, far too easy for me to claim that “nothing happened” this last year. My ill health forced me to take time out of my degree and to spend pretty much the entire year chasing up disability related benefits. It’s been a hard year.

I think, though, it has taught me a lot about myself. Mainly that I’m not as helpless as I often feel. I mean, who found me a new house to move into? Who got Adult Social Care to assess me? Who sorted out my claims for Personal Independence Payments, Employment Support Allowance *and* Housing Benefit? I did.
Who decided it was necessary to take even more time out my degree and organised for that to happen? I did.
Who is living in a house which contains no other members of his family for the first time in years *and* actually making that work? I am.

And whilst I’ve been doing all that, I’ve managed to maintain a social life, two romantic relationships and to keep politically active.
That’s not nothing.

With no partner living in the same city as me, I’ve discovered to my surprise that people like me in my own right, not just as one of a pair. I’ve also discovered that I can hold my own in activist circles when I thought I needed someone to back me up. I’m glad I’ve learned (finally) that I usually do know what I’m talking about and people want to listen to what I think.

I started this blog in 2013. It’s the first blog I’ve had under my own name – which is oddly freeing as I’m not trying to hide from my stalkers any more. I don’t worry about them reading this because I refuse to be ashamed of anything I write here. Yes, I am trans and bisexual and disabled. I claim benefits and I may not ever be well enough for full time work. I refuse to be ashamed of that.
I have things to say and I’m going to say them.

My new year was Rosh Hashanah and I thought up hopes and wishes for the next year then. Right now, I don’t know what 2014 will hold for me. I’m hoping to finish my degree, have a break from running around after benefits, spend more time with my two wonderful partners and to, well, stay alive as best I can.

When I was younger, I didn’t expect to live to be 25. I couldn’t see a future for myself that lasted that long without me taking my own life. This year I want to make it to and past my 25th birthday. This year I want to prove my younger self wrong and show him that even mentally ill disabled queer trans people like me get to have lives full of love and happiness that he couldn’t have even imagined.
It’s not much of an ambition but it is mine.

2013 (and 2012 before it too) was not an easy year for me. There’s been tears and mental health crises. But there’s also been joy and triumph and solidarity. There’s been love and hope. Things have changed massively from how I thought my life would be but I know I am making the most I possibly can with what I have.
2014 will bring it’s own challenges and difficulties, no doubt. But I’ve learned this year both that I can take on challenges myself successfully and that I don’t have to.

Happy New Year. Especially to the woman who’s loved me and wanted me throughout all the hard stuff and to the man who made the leap from being my friend to being my partner: I love you both and I look forward to continuing to do so for as long as I possibly can ❤