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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World AIDS Day 2014

It’s World AIDS Day and I’m struggling to find the words to describe quite what that means.

What it means that I left compulsory schooling without learning about the AIDS crisis.
What it means that I was 20 before I understood how to protect myself from HIV if I had sex with other men.
What it means that the LGBT community is still at high risk of contracting HIV.
What it means that so many of my LGBT ancestors died of AIDS.
What it means knowing as many as 50% of trans women of colour will get HIV.
What it means knowing some of my friends are HIV positive and facing discrimination daily.
What it means that I have sat with terrified people in clinics and held their hands as they wait for the test result.
What it means that I have learnt all my sex ed as an adult and learnt it all from community resources.
What it means to know my own HIV status and know that most people have no idea what theirs is.
What it means to know enough history to know that the wider community didn’t care about HIV AIDS until it started killing straight cis people too.
What it means that the LGBT community was brought together by the tragedy of the AIDS crisis and yet LGBT people my age and younger barely even know it happened.
What it means that bisexual men like myself are stigmatised by many because they blame us for spreading HIV.
What it means that even CHILDREN with HIV are discriminated against because the world still thinks HIV only happens to people who have lots of sex.
What it means to know that others believe God created AIDS as a punishment to my community for daring to exist out of the shadows.

What it means to know all that and also know that HIV is no longer a sentence of certain death. With appropriate medical care, HIV positive people can live just as long as anyone else.

Today is World AIDS Day. And I don’t have the words to explain quite what that means.

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?

In-between

I’ve got a few spare minutes so I thought I’d write a quick post for Blogging Against Disablism Day 2014. There are other posts I want to write about disability, gender and fashion, about internalised disablism and about the questions strangers ask me when they notice that I am a disabled person. Those can wait.

Today I have only a few minutes and one very precise thing I want to write about. And that’s the difference between how people who aren’t disabled seem to conceive of disability and what being disabled is actually like.

Other people seem to think that for any and all “abilities” people can either do them or they can’t. So either you can walk perfectly well or you can’t walk at all. You can either talk or you can’t. You can either see properly or see nothing, you’re either hearing or profoundly Deaf. You’re permanently on the edge of seriously harming yourself or you’re completely fine. You can be easily sorted within seconds into “disabled and thus completely unable to do anything” or “perfectly capable of doing any kind of work without any real difficulty”.

A LOT of disablism seems to rest on this idea which looks very obviously absurd to anyone with any direct experience of being or living with a disabled person yet this idea seems to me to be widespread. Even the draconian implementation of the Work Capacity Assessment here in the UK seems based on this strange dichotomy of “you can either always do something or always not” and “you’re either fit for all kinds of work or none at all”. When people call the fraud hotline because they’ve seen a neighbour walk from their car to their door when they use a wheelchair or scooter to get to the corner shop, their disablism is based in the idea that people can either walk or they can’t and that anyone who can walk can work (btw, if you find me a job that literally only involves walking short distances a few times a day, message me :P).

The reality of disabled life is very different. There is no neat split between “Things I can always do” and “Things I can never do” – almost everything is inbetween. Almost everything is something I can do sometimes under some conditions. Some days I might be able to walk half a mile using a walking stick, other days I literally cannot get out of bed. Under the right conditions and with appropriate supervision, I can cook a meal for six people from scratch. Most days however, I need another person to come in and cook for me. I’m happy and confident and I love my life *and also I’m very mentally ill and in serious danger of neglecting and/or harming myself*. These are not contradictions. This is my reality and that of thousands of other people.

Disablism seeks to reduce me to a list of things that I always cannot do (and there are plenty) and proclaim me able to do many things on the basis of my ability to do them once or twice a year. The reality is more complex and diverse than that. I live in the space in between “can” and “can’t” and if non-disabled people ever really thought about it they’d realise that *they do too*.

It’s Not a Priority

I’ve been musing on this post for a few weeks now. Having finally come to the conclusion that I’m not going to stop feeling a) too tired and b) too busy to write it, I’ve decided I may as well write it anyway, tiredness and busyness be damned.

So: I’ve been hearing the same comment, or perhaps more accurately the same type of comment, over and over recently and there seems also to be a particular type of person who will make such a comment. And it’s that kind of comment that is very obviously well-intentioned but still very hurtful but it never really seems appropriate to explain why it is hurtful at the time and besides it has taken me a while to figure out quite why I feel so hurt by it.

The comment is always some variation on “Hopefully you’ll be walking around without that thing soon!” where “that thing” is the walking stick that means I’ve been able to keep some measure of independence over the last year and a half. I then point out that it is incredibly unlikely  that I will ever be able to walk unaided again as standing and walking is so painful and exhausting for me that I cannot do it unaided, my stick is the only means I have of walking at all and my condition is lifelong, there is no known cure and the treatments that currently exist are mainly pain relief and resting. At this point, the person who originally made the comment tries to tell me to “Stop being negative” or that I should “never give up” and tries to give me medical advice despite not being a doctor and only having a surface level understanding of my condition. This is usually either a dramatic increase in exercise (something that could severely worsen my condition), some rather dubious change in my diet or the suggestion that really I’m just depressed and if I stopped thinking negatively I’d have boundless energy and be able to walk unaided and pain-free. Ha, as if – and incidentally, I do also have depression in addition to my fibromyalgia. While the two doubtless must interact, it is certainly not so simple as “Stop being depressed and you’ll be able to walk without a stick again”.

What do all of the people who have made such comments share? Firstly, they see me irregularly but fairly often – less than once a month but more than once a year. Second, they are not themselves disabled or chronically ill (or in the one instance of another person with fibromyalgia doing this, they do not have mobility problems). Third, they see me often enough to feel that they know me and have a relationship with me (as a friend, relation, tutor, porter, provost, regular bus driver, friendly local shop assistant etc) but not actually often enough to see the day to day, week to week effect of my illness and disability on my life. In other words, what all these people share is that they care about me and want the best for me but they are not in a position to know what “the best for Liam” actually is.

It would be sensible for people to accept that the people most likely to know how best to deal with my chronic illness are me, the people who care for me on a daily basis and my doctors. Something makes them forget that and makes them make these comments and I think I know what it is. Fear.
Yes, fear. I think these people who don’t see the days in bed or the regular taking of the three different pain killers, who don’t see me sitting on the floor by the fridge to put my shopping away because going to the shop has left me too tired to stand… I think they find the sight of this young man walking with a stick disconcerting. So disconcerting that they want the stick to go away so they can go back to thinking that everything is okay or that I’m just remarkably tired today and will be fine again tomorrow. The stick makes it obvious to everyone around me that, like it or not, things are not as they used to be, I am disabled and there is no pretending otherwise.

Even if that’s not what is actually going through their heads, it is what their words and actions communicate to me. People who couldn’t (or wouldn’t?) see the problem when I was still holding on to walls and furniture and other people to walk suddenly saw it when I started to use a stick. And they started to repeatedly suggest I stop using it and to become increasingly adamant that I won’t always use it the more I insist that I need it. People started to say that my condition seemed “better” or “worse” based solely on how close to a normal gait I managed whilst walking without considering that perhaps just like them I walk slower when I am tired.

I know I can’t see instead people’s heads and know what they’re thinking or feeling but the message I get over and over from people is: “You should prioritise looking more ‘normal’ and less disabled. We don’t want your disability to be so glaringly obvious and if we can’t make it go away then you should at least do other people the courtesy of making it look like it’s gone away. We don’t want to accept what has happened to you, we don’t want you to be different, we want to go back to being able to pretend nothing is wrong. Our way of walking (unaided) is inherently better than your way of walking and you should aspire to walk like we do because your way is inferior”.

That’s the message I’m getting, even though I know people are really only trying to say “I hope things improve” or “I wish you didn’t have to live with chronic pain”.

Here is my answer (or at least, what I sometimes wish I said instead):

“Walking without a stick is not a priority for me or even really a goal of mine. It’s not really that important to me and I don’t understand why it seems so important to you. I much prefer being able to get around using whatever aids are most suitable – whether that’s a stick, crutches, a rollator, walking frame or wheelchair – to being able to walk unaided because without mobility aids I can’t get very far and would need to spend days in bed recovering. I much prefer being able to get around and see the world but looking unusual and moving in a nonstandard way to being able to look and move more or less like most other people but confined to a tiny area.
Please trust me and my health professionals to make informed and considered decisions about my treatment. Please trust me to make informed and careful decisions about my mobility and care needs and accept that my priorities may be different from yours. This is my life, my health and my disability – trust me to manage it myself and ask for help or advice if I need it.
I don’t consider using aids and adaptations or finding new ways to do things to do every day things to be “negative thinking” or “giving up” – for me it’s just realistic to modify the way I do things to make them easier, less painful or less tiring for how my body works now. Continuing to try to do things the way I used to will only hurt and frustrate me whilst allowing others to pretend nothing is wrong.
I don’t care if how I do things like walking or carrying things or putting on a coat looks weird, I just care about achieving what I’m trying to achieve with the least pain and energy expenditure possible. Worrying about how odd it looks would only make these things more tiring. And besides, variety is awesome.
My way of walking (and dressing and eating and talking and being…) is not inherently inferior to yours and trying to make myself look more like you, trying to assimilate into a non-disabled people’s culture, really wouldn’t do me any favours. Just like you, I’m just going about my life trying to survive and to live and be as awesome as I can be – I can live without the pressure to conform as well.
My body has changed and I have adapted to it. There’s no sense trying to force it to change back by acting like the change never occurred. My body doesn’t work like other people’s bodies, there’s no point pushing it to measure up to rules and ideals that were never designed to accommodate it. I can only work with what I have and I have a body that needs a bit of extra help to walk, a body that needs rest, a body that needs pain relief – a body that needs me to find ways to work with it not against it. I have a body that, despite everything, I love and care for and who would subject that which they loved and cared for to standards it would be bound to fail?

Walking without a stick is not a priority for me. Maybe one day I’ll do it, maybe one day I’ll need a wheelchair, maybe I’ll always use a stick. None of these is inherently a “better” outcome as far as I’m concerned – as long as I can get to places and live my life I don’t really care how I move. It’s just not a priority.”

Note: This is about how I personally feel not about how “disabled people” feel or should feel. If you feel differently about your own mobility problems, that’s okay!
Further note: Yes, I still go through periods of grief and upset over my inability to walk unaided. I cannot always manage to feel okay about what has happened to me and frankly it would be weird if I was able to easily accept this. HOWEVER I do have to accept that I have mobility difficulties now, that they are unlikely to go away and that I need to find ways to get on with my life in the body G-d has given me cos no one’s going to bless me with another one.