take your ableism and get in the bin.

Ableist stories and examples

 

CN: talk of suicide, bullying and abuse

Yesterday I was subject to the most gross ableist attack by someone I had thought was a close friend. In her words, she accused me of ‘using my illness to get everything’. She was seething with vitriol, practically spitting the words.

I presume she meant that by having comorbid diagnoses of Bipolar II and BPD, I’m somehow able to swan around my penthouse suite that my oh-so-fortunate disability has ‘won’ me, being attended to by vast swathes of semi naked servants who are wafting me with gold plated fig leaves. When I get bored of swanning, I can go out to my high-powered job that I’ve managed to snag by virtue of being mental, because mental people get all the best jobs, don’t they? Then I can come home to my loving husband, children and stable family life.

No.

Just, no.

I have HAD it with pathetic and nasty jealousies, of oppression one-upmanship and everyone staking claim to some disadvantage more than others. I am sick to the back teeth of having to justify how fucking difficult my life is to people who should know better. Of having to justify the money I live on to people who are able to earn themselves a living in a way that I cannot, as hard as I have tried. Why am I constantly having to demonstrate my illness to people who claim to be allies?

If you have a problem with me, speak to me. We’re not twelve. Or if you don’t want to speak to me, get the hell away. Don’t stick around pretending to be nice, take take taking my emotional energy, telling me I’m so great, all the while seething your festering resentment. It’s childish and deplorable and it’s called gaslighting. If you really think that I get so many advantages because of my physical and mental illnesses I wish to god you could walk in my fucking shoes for a day. Actually, you’d be unlikely to even put them on, since I can’t leave the house alone. So privileged, much advantage.

You can dislike me. You can dislike my behaviour. You can refuse to accept my profuse and multiple apologies for acting like a dick when I’ve been unwell. But know that when you attack me for my disability, that is ableist behaviour. You are exercising your power to attack someone disabled for their disability. If you want to do that, know that you are ableist.

Ableism example

When you attack someone with BPD who already has constant suicidality and a fucking ruptured and fragile sense of self, know that you are knowingly causing harm beyond what a non-disabled person would experience.

When you accuse me of using my illness to bully people and get what I want, know that you’re silencing me from one of the few outlets I have – to speak about my illness, my disability and the structural oppressions I face.

When you say to me that I use my disability to bully people, I hear that you actually don’t believe it’s a disability at all. If you’re not prepared to accept the very few and limited occasions that my illness has made me act like a dick (obviously I’ve acted like a dick on many many other occasions, completely unrelated to any mental health diagnosis), and you’re not prepared to accept my apologies or reparations for that shitty behaviour, then really you should not enter into friendships with disabled people. Because you’re giving us the false impression that you might, you know, actually show some empathy and understanding.

But that’s just me expecting special treatment.

Ableism story

Further reading: this is a nice quick blog about the behaviour of people with BPD.

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A Literary Life

I’ve been mentally troubled for a long time and began self harming when I was 13.

My parents referred me to the Children’s mental health service in Sheffield, but despite the psychiatrist telling me I should be admitted to their adolescent unit nothing ever happened. I’m not sure if the referral got lost or my parents quashed it.

I was started on antidepressants at 15 and have been on and off them since. But this blog isn’t about medication, or psychiatry. It’s a journey of my mental illness through the books I’ve been recommended over the years.

My periods of depression  became really noticeable when I began work in about 1995, and after revealing my concerns my GP recommended Overcoming Low Self Esteem, by Melanie Fennell. IMG_6760

It had some useful information but didn’t help with my depression.

A couple of years later I returned to my GP for help. By this time (around 1998) the mania for CBT was sweeping the nation, and I was prescribed six sessions and this workbook:

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In fact, one of my psychologists was so evangelical about CBT that after one hospitalisation she bluntly told me that if I was still ill ‘it was because I wasn’t doing it right’. Not that I had untreated bipolar or anything.

Whatever, the black dog continued to follow me. After a complete breakdown whilst at uni in 2005, I finally received my diagnosis of bipolar, and was given this to read – I would highly recommend, incidentally, both for sufferers and friends and family.

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My (private) psychiatrist was the first person to really treat me as an intelligent equal in our dealings, and as a result he suggested I buy this weighty tome:

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It was pretty pricey as I recall, the flyleaf says $65, but I got a lot out of it. Although it’s written for clinicians, each case study has a ‘takeaway’ summary at the end so you can get the gist. Invaluable for finding different treatment combinations – and if you’re paying a private doctor I would rather be doing the reading on my time than his.

On the subject of bipolar I should also mention this autobiography by Kay Redfield Jamison, who is a clinical psychologist who herself suffers from bipolar. It was one of the first books I read that made me identify with her symptoms and wonder if that was me, too.

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After a few years respite, in 2012 I deteriorated following the death of my mum and the strain of being the sole carer for my grandma. I tried (repeatedly) to commit suicide, and whilst in hospital was seen on a psychiatric ward by a locum doctor. I had never seen her before or since. However, she immediately rubbished my bipolar diagnosis and said I quite obviously had Borderline Personality Disorder. Whilst in a recovery house post-hospital, I read this book, which again I’d recommend:

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It was hard to shift my mindset from believing for such a long time that my mood state was caused by neurological imbalances, to believing that my illness was a series of maladaptive behaviours brought about by childhood trauma.

I didn’t dismiss the diagnosis – I recognised lots of patterns from the book that had played out in my own relationships. My issue with BPD was then, and has always been, a tendency to pathologise normal behaviours. If someone has a stressful day and comes home and has a glass of wine this is normal, but if a BPD sufferer does the same they are ’employing a maladaptive coping strategy’ to deal with their feelings, and should actually go and sit in a field meditating instead. Humph.

There being no NHS treatment for BPD in Sheffield, the hospital recommended this workbook and thusly discharged me, duty of care completely fulfilled:

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It’s not a bad book and I did learn a lot about using ‘healthier’ coping strategies.

When I came to London in 2014 the debate raged on as to if I had bipolar or BPD. I was ‘streamed’ into the BPD service as I was told I couldn’t be treated for both, it was one or the other. I was told that the Personality Disorder service would offer more in the way of therapy whereas the Bipolar team mainly focused on medication. From experience I know that the NHS relies heavily on older, cheaper bipolar meds such as lithium and antipsychotics, which can severely limit normal functioning and have severe side effects. My psychiatrist told me this week that 45% of the bipolar population have type 2 diabetes (compared with around 9% in the general populace).

So, once I was under the Personality Disorders Unit I endured a year’s wait for my therapy – originally planned to be Dialectical Behavioural Therapy as in the workbook above, but eventually, in about 2015, decided to be Schema Focused Therapy. Here’s my reading list for this one:

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Look at that title. Victim blamey somewhat? So, you’ve gone through trauma but CHEER UP you negative Nelly else it’s your own fault you’re still poorly.

My schema therapist was lovely, and I tried hard. I understood that the one of the principles of psychotherapy is that you have to get worse before you get better, but I got worse. And worse. And worse. After about eight months I was a mess, and we decided to call it a day.

I was referred back to the list for Dialectical Behavioural Therapy.

It’s hard to explain what went wrong here except for the fact that my therapist had the empathy of a block of wood. She was impossible to establish any rapport with, and as a result I found it incredibly hard to open up. When I tried to raise this with her I was told that it was her or no-one, and when I complained to her manager, I got nowhere. The following month, I learned they had both left the service to set up together in private practice.

There followed a year without treatment. With rapid cycling of moods, extreme anxiety, agoraphobia (I booked a trip to Edinburgh to the festival and locked myself in my rented flat, never seeing one show), the only thing that kept me going was my substance misuse worker. I’d originally been referred for help with drinking as I was drinking heavily to cope with my moods and this often precipitated a suicide attempt. After about four months of seeing my worker, she said i no longer had a problem, but we carried on seeing each other because she knew I was getting no therapeutic support.

All the good ones leave, and in June 2017 she sadly she went off to work for another trust. My condition deteriorated rapidly. I was self harming, never leaving the house, not even washing, and having flights of mania within all this. I was (and remain) like a butterfly trapped in a lighbulb.

I took the only remaining option and went to see a private psychiatrist. Within less than two minutes of seeing me (and assessing the questionnaires I’d completed in advance) he diagnosed me with mixed affective state bipolar. I was back where I’d begun.

Mixed affective state bipolar is not the same as bipolar one or two, so I was given further reading to try and understand my condition. Today’s book:

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To be frank, whereas I eagerly attacked most of the other books, desperate to understand the hell I was going through, with this one I just feel tired. I feel like I could see 10,000 different psychiatrists and get 10,000 different answers – each one swearing that their predecessor had it utterly wrong.

But for now, it’s what I have.

Something of a Car Crash

A mental health patient explains the frustrations of trying to convince doctors that her illness is biological, rather than caused by a bad night’s sleep, a row with her boyfriend or her menstrual cycle.

The other day I bought a new car. It was a lovely car, but it had a design fault, quite a serious one. Whilst driving along a straight piece of newly-tarmaced road one day, the brakes failed, causing a nasty accident (no onlookers were hurt).

I took the car to a mechanic who confirmed that the brakes were faulty. However, In the weeks following the accident I had to have a series of conversations with the police, safety experts and insurance specialists who were investigating the accident.

The conversations could be summarised like this:

Official: So madam, what do you think caused the accident?

Me: The brakes failed. I have a comprehensive statement from a senior mechanic, confirming that brake failure was the cause.

Official: Yes, but let’s look into this in more detail. Was there perhaps a pothole in the road?

Me: No. The road was newly tarmaced, and in any case, it was the brakes that failed.

Official: I see there are large trees in the area. Leaf build up from overhanging branches can be an attributing factor for car accidents.

Me: It’s the middle of summer, there is no leaf drop. And I think I mentioned, it was the brak-

Official: (interrupting)  It’s currently Ramandan. Fatigue caused by fasting can cause one to lose concentration on the roads…

Me: I’m an atheist. And so is my husband, who was driving the car at the time of the accident.

Official: And how is your relationship with your husband?

Me: IT WAS THE F**KING BRAKES

This is what it’s like trying to explain to health professionals that your mental illness has a biological, rather than a psycho-social, cause.

For the record, I have a dual diagnosis of Bipolar Disorder, which is mainly considered a physical/biological illness, and Borderline Personality Disorder, which is frequently considered to be caused by, and influenced by potholes ooops I mean environmental or social factors. In my experience there is a massive reluctance on the part of the NHS mental healthcare side to accept that sometimes mental illness isn’t attributable to social factors, and is just caused by my brain’s fucked up chemistry.

  1. This website is helpful if you want to know more

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No doubt others will have different experiences.

24 Hours in Hell

psych ward

 

I hardly even know where to start on what happened over the last 24 hours. After voluntarily admitting myself to a psychiatric ward at Highgate Hospital, I soon realised it was a frightening and unsafe place, with half-naked people screaming, spitting and shouting throughout the whole ward, and staff doing little too stop them. I’ve been on psychiatric wards before I moved to Camden – and yes, there are some extremely ill people in such places – but this was chaos.

I’d arrived at 6pm. I realise there are resourcing issues in the NHS and I realise this was the day of the junior doctors’ strike, but as it happens this ward did not appear understaffed – when I arrived on the ward it had a ratio of 1 staff to 2 patients. What was obvious was a culture of contempt within the staff team for the service and for the patients, with one staff member standing around bragging about how she “couldn’t wait to get out of here in six months” Only one member of staff introduced himself to me. No other staff member smiled at me or said hello. No one told me about meal times, medication rounds (in fact my medication was missed once – the staff seemingly forgot about me – and the other two occasions I had to chase nurses round the ward telling them I needed my meds – there seemed to be no system in place for dispensing meds at regular intervals), no one told me who staff were, I had my valuables removed with no receipt and was told I could not have them back, no one mentioned the role of care plans/keyworkers, who would be my assigned worker for the shift, where I could get a cup of tea, where the fire exits were…it was terrifyingly shambolic. I phoned my boyfriend in distress and he could hardly hear me over the cacophony of noise outside my bedroom.

I was especially afraid that I would not be able to sleep, as the ward had no sense of day or night. On previous wards I’d been on, evening staff had a routine to create a calming atmosphere by dimming the lights, speaking more quietly, and even offering patients a milky drink. On this ward the staff walked around the bedroom corridors shouting to each other with no regard for patients who might be sleeping. The lights were glaringly bright and even though you could switch off your bedroom light, every half hour staff would remotely switch on a light in your room to check on you through the observation window.

At 10pm, unable to deal with the noise and threatening atmosphere, and convinced that being here would not help me get better, I asked for my belongings and tried to leave. The person on the desk, who wore no ID – so I have no idea of their position, be it nurse or support worker – told me I couldn’t leave until I’d seen the doctor. I asked them if, (not having yet seen the doctor) I had been formally admitted to the ward. If I hadn’t, then I wished to leave.

I was not given a clear response. I was told “you need to be seen by the doctor” but when I asked again if I had been admitted (as since I’d been on the ward I’d had no medical, been given no information and in fact nothing except a thorough search of my belongings and the removal of my phone and laptop charger, medication and anything sharp); the official simply repeated, you have been admitted because you are here.

I stood and “queued” at the nurses station for two hours until the doctor finally appeared. During this time I experienced patients climbing on the nurses’ station, spitting in boxes behind the station, constant screaming and shouting and staff doing little to manage, calm or soothe distressed or angry patients.

At midnight I finally saw the doctor with another ward official, who I had asked to be present as a witness. I sat down and  again asked if I had been admitted as a patient to the ward. She replied “that’s what we’re doing now” so I said “well in that case, I don’t want to be admitted and would like to leave, please.” I explained that although I was very depressed and anxious the atmosphere on the ward was in no way therapeutic and was exacerbating my symptoms.

The doctor was adamant that I could not leave until she had spoken to me. I asked her several times for written information about my rights as a voluntary (“informal”) patient but she refused to give me them “until she’d finished admitting me”, despite me repeatedly saying that I wanted information on my rights before we continued with the process.

At 2.30 am, after the doctor had finished her paperwork she presented me with a factsheet on informal admissions. The first paragraph read “The patient must give informed consent to their admission. They must be informed of the restrictions that will be placed upon them BEFORE they are transported to the hospital ward”. This was my first sight of this information.

I told the doctor I hadn’t given informed consent and that I believed they were unlawfully detaining me. She responded by telling me that there was no way they would release me because it was the middle of the night (despite the fact I’d been trying to leave since 10pm, and my boyfriend, who I’d phoned in distress and asked to come and help me, was waiting outside in a cab). I had a “choice” of remaining as a voluntary patient or she would place me under a section of the mental health act compelling me to stay against my wishes. This section 5(2) of the Mental Health Act allows the hospital to detain you for up to 72 hours, and carries no right of appeal.

I realised I had no choice but to remain “voluntarily”  but asked for it to be noted that I’d made the decision to stay under duress and headed back to my room. There was a patient asleep on the floor in front of the fire exit, and outside my bedroom, two patients were having a party, playing music and singing at the tops of their voices. When I said to the ward nurse “it’s 2.45am, how am I supposed to sleep?” he responded that “he’d ask them to turn it down” but couldn’t do any more than that.

The whole place was threatening and frightening and it was unbelievable to me that they’d place someone whose main presentation is anxiety into such a place.

At 9am the next morning I phone the Borough’s Mental Health legal manager, who is responsible for the Deprivation of Liberty Safeguards which relates to the section of the Human Rights Act that says you have the right not to be unlawfully detained. He informed me that by being threatened with a Section I’d been coerced into staying and that in fact the nurses had no authority to prevent me leaving when I’d originally asked at 10pm.

He phoned and spoke to the consultant who, although she advised me to stay in hospital, judged that I was not “sectionable” and was therefore free to leave.

The whole experience was terrifying and traumatic, and should never have been allowed to happen. Everyone I dealt with that night had a shocking lack of knowledge of, or regard for, patient’s basic human rights.

 

 

 

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