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?

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.

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.

We are not your collateral damage

Being a “lefty”, a student, a feminist, a vegetarian, a disabled person, an LGBT person and a Jew, I find that a lot of my friends have causes that they are passionate about and actively campaign about – not least because almost all of my friends are in at least one of those categories.

And I get that. I really do. I know how it feels to look at some terrible injustice and think “If only people knew this was happening, they’d be so angered and upset they’d just have to do something about it”. I know how urgent it can seem, how important, how necessary. And it is important and those issues that set your heart pounding, the things that get you up in the morning determined to make the world a better place are things that often need more attention and more people working for change…

BUT.

Not at the expense of the health of people like me. Not at the expense of people with mental health problems that can be triggered by seeing distressing images or videos or reading graphic descriptions of violence.

This is really quite, quite simple. Don’t use shocking images to get your point across and if you’re going to use shocking images or graphic descriptions of violence, gore or medical procedures provide a warning so people can choose to opt out of seeing/reading them.

But it’s meant to raise awareness…

That’s not a good enough reason to risk causing serious harm to someone else’s mental health. Some images will cause some people to experience distressing symptoms such as flashbacks, intrusive thoughts, pyschosis or panic attacks and may lead to some people harming themselves. That’s not an acceptable thing to risk – no matter what you’re raising awareness of. You don’t get to decide for other people that your message is more important than their safety – so provide warnings and let people make their own choices about what they can safely see.

But of course it’s distressing! I want to shock people into action…

I’ve heard this excuse a number of times and I get it. You know that images like the one you’re sharing are distressing. You’re pretty upset yourself and you think that seeing the image will move people much more than reading a description of the situation. Heck, you might even be right about that. But getting triggered is not just being upset or distressed and if action is what you want from people as a result of you sharing an image, triggering people is entirely counterproductive. Being triggered involves something causing someone to experience severe negative mental illness symptoms and can often result in that person spending hours or days unable to do anything but try to cope with and recover from those symptoms. I am no use to women’s rights if I am crying in a corner and no use to Palestine if I’m hyperventilating. In the long term, people who have the kinds of mental illness that can be triggered may find ourselves avoiding precisely the kind of activism you want us to get involved in because we are not safe when people around us share potentially harmful images without warnings or attempts to gain consent. We simply can’t stay involved if harming us is seen as somehow acceptable or “collateral damage”.

But it’s for the greater good! / Triggering won’t affect very many people…

If you’re making this argument, take a good long hard look at yourself and think “What kind of person am I? Am I the kind of person who is okay with causing harm to other people to further my aims? Even when those are innocent, uninvolved people who might even genuinely want to help my cause?” Have some compassion, please. If you can further your cause without harming people and you choose to do it in ways that can harm people, I’m not going to think of you as a nice and trustworthy person no matter how good your intentions.

We are not your “collateral damage”. We are not eggs that get broken so you can make your omelette. We are people and we deserve to be able to be online and be involved in activism without other people putting our mental health at risk.

Autism, Linguistic Processing and Lip Reading

I’ve a lot of thoughts about more political stuff going round in my head but am having trouble separating the different strands into things I could actually write about, so instead here is a post about one way my autism affects me and ways that I work around it.

From talking to lots of other autistic adults, I’ve learned that quite a lot of us have difficulty with something called “linguistic processing”. What this means is that our brains take longer than most people’s brains to differentiate speech sounds from non-speech sounds and so we are slower to realise which sounds we can hear are most important. Neurotypical people’s brains seem to be pretty good at quickly working out which sounds are speech, our brains have to work to remember that not all sounds need equal attention.

When I was a young child I was repeatedly given hearing tests only to find that my hearing is perfectly typical. Other autistic adults have recounted similar experiences. Part of this of course stems from autistic people’s tendency to act differently from neurotypical people, teachers and parents may have difficulty believing that a child can hear if that child doesn’t look up when their name is called or doesn’t look at people who are speaking – but these are not really indicators that someone has heard what is being said. The other reason why people might repeated assume that an autistic child or adult is deaf or hard of hearing is the noticeable delay between something being said to us and our response. If this delay is long enough that the other person repeats what they said, it looks like we didn’t hear them the first time.

So, what’s happening?
When someone speaks to me, it can take a moment for me to recognise that anyone is speaking. Then I have to recognise that someone is speaking *to me* and I am supposed to listen. Once that’s out of the way, I have to check what language is being spoken. If it’s English, I then hear all the words and start tying them together as a sentence in my head. This takes time. Whole seconds. More if any words are unfamiliar or unexpected. I often have to make educated guesses about how the sentence began or what some of the words are because I couldn’t listen to them properly over my own thoughts of “Is this speech? Am I being spoken to? Do I need to respond? Is this a command or a question?” Sometimes I guess incorrectly and answer a question that wasn’t asked – this furthers the suspicion that I cannot hear. But can hear fine – what I can’t do is process the information as quickly as it is being given.

I’ve had to live with this all my life and there are a few ways I’ve learnt to adapt. One is by lip-reading. Watching the shapes people’s lips make can give me more clues as to what words they are saying. Sometimes I find myself silently mimicking the shapes with my own lips to try to work out what someone is saying. Other things that have made my understanding of speech much better are subtitles (closed captions) and asking people to make or provide notes on what they are saying / will be saying. Power points are great for this – if I can read your powerpoint slides I have some idea of what you might be saying, the same goes for advance copies of lecture notes. Of course, most speech is not lectures or TV but writing down key points of what you are saying or have just said can be very helpful. I can’t write them down myself as I’m still trying very hard to understand what you said at all but it is very helpful when people write down what they are asking me to do for example.

What can you do?

  • Give people enough time to respond. Wait while I/they mentally rewind and replay what you just said until I/they understand it. Don’t immediately repeat what you just said. If about 30 seconds have elapsed, ask if you should repeat what you said.
  • Information in other formats. Write down anything really important.
  • Put subtitles / closed captions on your videos online and transcripts on your podcasts. I won’t be able to understand them properly without this.
  • Try to face the person you’re speaking to and not to obstruct their view of your face.
  • Don’t expect people to look at your eyes – or even at you at all – when you’re speaking to them. Many autistic people find it much harder to concentrate on speech if they are looking at someone’s face. Some of us lipread, some of us don’t.
  • Offer to go somewhere quieter if the person you’re talking to seems to be struggling – even if you don’t think it’s that loud.
  • Read this

BADD – People don’t listen

If you’ve read my blog much or know me in real life, you’ll have gathered that I differ significantly from some platonic template of “Humanity” in a number of socially undervalued / undesirable ways – which is to say that I’m disabled.Humans are all really quite different from each other and we all accept that – but some differences are seen as deficiencies, as problems, as wrongness. Part of the social model of disability is the idea that it was never set in stone which differences would be considered just differences and which would be considered problems. More excitingly, it still isn’t set in stone. Some “problems” can cease to be problems.

My body and my brain deviate from “standard issue” quite a bit. Increasingly, in fact. I have never been and never will be what is currently understood to be “normal”. For the most part, I’m okay with that.

Other people aren’t. They won’t all admit it but a lot of people seem to find people like me – disabled people – pretty disturbing. How do I know this when most other adults won’t straight up call me freak or cripple? I know this by people’s reactions when I talk about my impairments (i.e. the differences about my brain and body that my society considers to be deviations and problems).

When I talk about my autism, dyspraxia and dyslexia, I tend to be fairly upbeat and straightfoward. I like my brain, I’m used to how it works, I am in many ways a master of using it to learn and I know how to turn my differences into advantages. Whilst I wish there’d been more support for me when I was a child, for the most part I enjoy my neurodiverse brain and I get on well with it despite the difficulties I have navigating a world that wasn’t really designed to accommodate people with brains like mine.
When other people hear about my autism, dyslexia and/or dyspraxia, they say things like “I’m so sorry” or “That must be really terrible for you”. They use words like “suffers” to describe my life with my brain and they tell me I’m “really brave” and “an inspiration” for getting a degree. Basically, they treat my life long learning differences as though they are inherently and always a bad thing. They talk over me and instead of listening to how I feel, they end up telling me how they feel and how they think I ought to feel.
They are scared and sad and confused. They don’t want a brain like mine so they imagine I don’t want it either. But I like my brain and it would be scary and sad and confusing for me to contemplate having a brain like theirs instead.

When I talk about my chronic illness and the physical limitations and pain and tiredness that go along with it, I still expect people to agree with me that chronic illness is awful and to be sympathetic. This isn’t usually what actually happens.
When I talk about my chronic illness, I talk about constant wide spread pain, persistent exhaustion, unfulfilling sleep that nontheless takes up 11 or 12 hours of my day. I talk about the sadness of seeing my ability to walk slowly fade away, the fear that words like “incurable” and “progressive” fill me with, the grief of having to contemplate that I will likely never walk without mobility aids again. I talk about not having enough energy to walk to and from the campus shop, of having to cancel plans with friends because I’m in too much pain to get out of bed. Frankly, I talk about how this is my lot in life and G-d seems to be taking the fucking piss by giving me all this to learn to live with.
People nod and look concerned and then tell me I need to exercise more. Or eat more fruit. That a “strapping young man” like me should be off playing football. That I should get out more or see more people. They suggest alternative therapies and guilt-trip me later for not trying them. They suggest the “obvious” healthy living advice (more exercise, better food, positive thinking) as if I wouldn’t have tried that first. They tell me to look on the bright side, they insist without evidence that a cure will be found soon, they outright tell me I could walk fine if I just tried harder. Again, people talk over me but this time it’s to minimise my experience, to make it sound less painful, less awful and more easy to fix. They never tell me I’m still valuable even if I can’t work, they tell me I’ll soon be able to work. They don’t tell me “That sounds really difficult to live with” they just insist that things will get better soon.

When I talk out my mental health problems, people don’t even know what to say.

All I can gather from this, years’ worth of evidence from countless conversations is that people have their own ideas about disability and illness and they’d rather believe them than listen to my actual experience. They’d rather believe that learning difficulties are awful and tragic than accept that I love my brain and they’d rather believe that chronic illnesses are temporary, easily cured and never affect the young than listen and help me with the grief that is forming part of my process of adapting.

I want to end on a positive note so I’d just like to say thank you to everyone who has ever listened to and accepted my own thoughts and feelings about my experiences of my impairments. You’re rarer than you should be and you make me feel like a real and valid person. Thank you.