Author Archives: robotpinemarten

About robotpinemarten

31 year old Londoner with mental health problems, chronic illness and an obsession with dinosaurs.

BoPo or BoNo (body positivity and disability)

IMG_2457

A collage of 4 photos of me with Domo-Kun a large brown Japanese TV mascot

 

I am not body positive, I won’t go into too many details about the concept of body positivity itself because there are many people who can explain it far better than I can but the short explanation is that it stems from the feminist fat acceptance movement and aims to encourage people to feel better about their bodies it has also become a campaign for inclusion for those that aren’t always included in movements surrounding self love like fat people, Queer and trans or genderqueer people, people of colour*, disabled people.

I fall into more than one of these categories yet for various reasons I don’t feel a part of the movement. For as long as I’ve been self aware I’ve disliked myself, I don’t say this for sympathy or pity and I don’t want comments expressing that, I don’t doubt that a lot of this is due to upbringing and bullying at school and at home. Ableism and fatphobia were part of my childhood, I’ve been disabled since birth and dealing with unrelated chronic problems problems for several years and mental health problems since I was a teenager.

I’ve struggled with my weight for years and for most of my life I haven’t felt like I fit in anywhere, not able bodied but not visibly disabled or as impaired as disabled peers; even in school when trying to express this feeling to the head of special needs I was faced with ableism, I also never quite felt comfortable with my gender and sexuality. For several years I fought for a diagnosis and explanation for my chronic pain and finally last year I saw a rheumatologist and had an MRI scan and while getting answers was a relief it meant the fight for answers was over and I had to accept that this is my life now. People often say there’s a period of grieving when you become disabled and I didn’t think this would happen to me but it has, I’ve been really angry at my body and frustrated when there are things I can’t do that a few years ago I could, its hard accepting my wonky, bendy, tired body and facing my limitations, I know I’m not severely disabled and other people have it worse but that doesn’t help me.

It’s really hard for me to feel any love towards my body when it lets me down, holds me back, doesn’t work the way it should it causes me pain and fatigue, my joints go out more than I do and I often feel like I’m 92 not 32. Sometimes it feels like not being body positive or embracing and accepting my size and shape makes me a failed feminist; its actually refreshing to see people I look up to who that are plus size who openly share photos of their body both as a job and on their personal social media say they’re not body positive, its not that I want them to feel bad about themselves its more that I respect their honesty. There are also disabled people and people with chronic pain who are body positive though I know it’s a process and not something that just happens overnight.

In some ways inclusion is improving, especially with a growing number of plus size models and general visibility of fat people who don’t believe they should cover up or hide their body yet there are still flaws especially with disability. Scrolling through Instagram looking at the bodypostive, bodyposi and bopo hashtags shows lots of plus size people yet there’s a lack of (visibly) disabled people and many of the messages that come with body positivity have undertones of ableism such as the focus on health and healthy is the new skinny which are also problematic for people who eating disorders or people in recovery from an eating disorder, then there are the concern trolls who target plus size people and fat shame them by acting as though they care about the health of an overweight person (lots of disabled people are overweight because of health problems not the other way around). Big media campaigns like the Dove real beauty also fail at disability representation, are disabled bodies not beautiful? Disabled people are also subject to intrusive questions about their bodies from being asked why they use mobility aids to questions about their sex life and even accused of faking having a disability.

real-women-dove

Dove Real Beauty

The lack of visibility itself is ableist and sends out the message that only non disabled people should feel good about themselves and how they look, for something that is meant to be about inclusion it really needs to be inclusive and not just for one group of people because that’s not how diversity works. Feminism itself is often accused of being only accessible for non disabled white cis middle class women who have received a good education (I’ll be ranting about that soon) in an ever increasing digital age the body positive movement could be one way to change that by utilizing social media as a more accessible platform.

*Other groups of people also face exclusion especially people of colour but no one wants another white persons perceptive

Awesome people to check out:

Fullerfigurefullerbust

Annika Victoria

Body Posi Panda

Glitter and Lazers

The Feeding of the Fox

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Coping admirably

The back of one of my pink smart crutches with a sticker saying coping admirably


*clears out the tumbleweed*

Long time no blog, I’ve had a few semi written posts on the go but most of them seemed to get stuck half way.

There are lots of changes going on around me and in general this year has been full of them, I’m not normally a fan of change and prefer to keep a tight grip on familiarity instead yet it seems to keep happening despite my complaints. I don’t like uncertainty yet I’m bored; as ever my brain is a contradiction, I often feel as though I’m stagnating seeing people move on around me people I was in the same position as a couple of years ago have bypassed me it’s no coincidence that as I write this young people across the U.K. will be getting exam results and finding out where their future path lies thinking about my own education and career tends to leave me teetering on the edge of an existential crisis.
I’ve develop a habit of doing all the things I feel like I need to make up for lost time and lost years to catch up with all those ahead of me. Since joining Mind there have been many staffing changes and several younger members of staff have joined, people younger than me which as well as the problems with attachments to people who have left has brought some resentment and shame at being a volunteer managed by people younger than me; there are volunteers older than me but most of them have had lives already and at 32 I’m only just at the start of any kind of career.
One thing I’ve been trying hard to do is be honest and open more, in some respects I guess I’ve had to as I no longer have one person I can go to and no mental health support has probably forced me to do this. One thing they don’t tell you in therapy is how long things take to have an effect I finished the main MBT treatment in 2013 and sometimes it feels like my brain is only starting to process it, I’ve said since it finished that the ways it helped me aren’t so obvious as the main issues I have such as self harm haven’t gone away but expressing my feelings and telling people how I feel about them is something that although still a work in progress is probably the biggest change and recently I’ve surprised myself with these changes by telling people that I feel I’m trying to make up for lost time and compensate for the years of not doing anything.
The downside to doing all the things is I’m currently lacking direction, life doesn’t come with a map it’s more like a badly programmed sat nav that has you going all the way across the country for a pint of milk instead of 5 minutes up the road and right now I feel like I’m sitting trying to find the right direction but I’m not sure exactly where I’m going and I’m not sure the address is right but I sort of know where it is just not exactly. What I know is I want to work in mental health in a way I can use my lives experience, I know I enjoy working directly with people (oh how 16 year old me would have laughed at that) I also enjoy delivering training but I don’t know whether I want to work with adults or young people or what sort of project or service I’d like to work on. Sometimes I think life was easier when I was catatonically depressed, if anyone knows how I can resign from adulting please let me know until then I’ll be building myself a pillow fort.

Coping admirably sticker from hand over your fairy cakes

 

I know I’ve talked about cost before and I do understand the pressures placed on the NHS however this isn’t just about the actual finances but the attitudes towards money being spent on mental health care. Last year when the mental health trust that covers my area was considering putting in a crisis café I went to a consultation which was for service users, mental health professionals, third sector workers and generally anyone that might be interested or might consider bidding on to run the service.

Someone else attending the event worked out how much it would cost per person per night to attend a crisis café based on the figures from the model that the trust were basing it on and asked whether this was good value for money. This frustrated me for so many reasons one of them being why are we looking whether someone’s life is a cost effective use of funds and another was that the alternative to me is self harm and a&e.

It costs the NHS money to treat me – stitches and anaesthetic, dressings, bandages, Doctors and nurses time and psych liaison, if I get an ambulance to take me there because of blood loss or not feeling physically able to get there alone it costs the health service money and although I don’t know the exact figures (and I’m not sure I’d want to as it increases the guilt) but I’m sure it’s a lot more than the cost of attending a crisis café. I’ve seen people say that if you do it to yourself you shouldn’t expect the NHS to pay to fix it and while I can think of a few things I’d like to these people I also think once you start going down the route of denying people treatment if they’re responsible for the cause I think it’s a slippery slope towards finding blame for almost anything (didn’t notice your laces were undone sorry your fault, broke your leg skiing should have stayed at home).

Prevention is almost always better then cure and while I’m under no illusion that crisis cafés or any other crisis support would mean that no one went to a&e; I know it wouldn’t mean I never self harm but it would be an alternative. There’s a lot of talk at the moment especially with an election coming up about mental health and in particular the mental health of young people. I volunteer on a Youth wellbeing project and highly encourage mental health education and advice in schools but it doesn’t help the adults or children already experiencing mental health difficulties, it looks good on paper and even a liberal cynic like me can almost believe that’s not the only motive but it’s almost as if they want to write off those already in need of help and start again.
If we want people to thrive rather than just survive there needs to be more support, more money and more collaboration between the NHS and the third sector (actually collaboration not just expecting the third sector to pick up the pieces), the crisis concordat I’m part of has been cancelled twice in a row, it only meets every three months and the last one was in October there now won’t be another one until August. People with mental health problems deserve better and deserve more, too many people are left with nothing or sent home from a&e at 3 am with no way to get home, at this rate we cannot survive let alone thrive.

Surviving or thriving? (Another awareness week)

A mental health awareness week promotional image by the mental health foundation


Is there anyone who isn’t aware of mental health problems? Survive or thrive? Sink or swim?
Much like my life and my mental health the way I approach these awareness days/ weeks/ months are how I feel about can vary. This is partly down to whether I’m representing RB Mind or another mental health group or whether I’m just representing myself. Having started this blog at the beginning of the year having awareness events can be a prompt to write and I always try to be genuine, I want to present the reality – my reality of having a mind that is often not mentally healthy but the reality is it’s often not very interesting.

I often feel like contradiction and the idea of survive or thrive fits that nicely because I can be one or the other or both, although I want to be seen for the things I do at mind or with mental health awareness rather than the things I do to myself I also want to fight the illusion that I create. The term high functioning is thrown around a lot in various communities whether it be neurodiversity, learning disability or mental health it’s meant to be a compliment yet I’d happily drop the term into the nearest active volcano; I’m a (mostly) high functioning borderline I volunteer, I live alone, I’m in a relationship and while none of these are bad things they tend to be used to overlook the other side of things and the part the wants to sabotage all this because the more you do the less help you get.

Black and white thinking is something frequently mentioned with BPD but it’s not as simple as they make out my thinking can be very black and white in specific areas but in others I can see in technicolour. There’s a lot of mental push and pull especially when it comes to “recovery” I’m not a fan of the recovery model some days I want to move on from all this and thrive others I miss and crave the self destruction some days I go round in circles between the two and it’s times like this that being high functioning and self aware is actually painful because I can see what I’m doing to myself and others but there is no pull in the world strong enough to stop me from self destruction that can override the self hate and self sabotage.
I found myself arguing with someone the other day trying to break this myth that I’m high functioning and can manage without support that I’m ok that they only see one side of and it’s not the side that gets kicked out of a&e at 3am or that feels like the internal rage could burn up the entire world if it was fully released. So many things are subjective and thriving is one of them, as much as I welcome the idea of mental health awareness I’d like an awareness of the lack of services of the people who turn up to an appointment to find their care coordinator has left, of the people who feel that they’ve been chucked onto the mental health scrapheap because they’re not recovered and the high functioning people who are really just treading water and desperate to keep their head above water.

In search of validation 

Cardboard letters B P and D painted black with splatters of colour across them


I rarely feel pleased with myself for the things I’ve done, I get pleasure from the work I do and feel proud of the things that have been achieved but I don’t feel proud of myself. I’m not writing this because I want compliments or want people to tell me I’m great I struggle with praise and don’t know how to respond to it, criticism or negative comments are more familiar to me.

I mentioned in a previous post that I have a type, the same type of person I get attached to, there have been a few notable ones. There’s an obvious pattern it’s something I’m very aware of and even embarrassed by I’m 32 I shouldn’t be looking for a replacement mother, I know I’m not alone but it’s still hard to talk about, just writing this makes me feel ashamed.
I don’t have any contact with my family, I haven’t spoken to my mother in over two years and even when I did she wouldn’t be someone I’d go to if I wanted validation or praise so I look to other people to be proud of me even though I don’t feel it myself. I know everyone is different and I’m often told I’m hard on myself but I don’t see it, to me I’m so far behind my peers and where I should be by now. I have a tendency to separate my life into different boxes and present different sides of myself to different people, at work I want to be seen for being capable and functioning I’ve found it hard to show the parts that don’t function well as if I’m different people when I’m at home, capable by day self destructive by night.

Recently two of the people I looked to for praise or validation, the people I wanted to be proud of me and see me achieve things have gone from my life and aside from feeling that a large part of my support system has gone I don’t have those people I wanted to be proud of me and I’ve gone back to separating myself. I know the obvious answer would be to feel pride in myself and not look to others to feel validated but I’ve never felt good enough or that I’ve achieved anything and the behaviour patterns and attachment issues are hard to break and just move on from. 

End the stigma 

A large rabbit comforting a small rabbit with the words “life is tough, my dear but so are you” beneath it


There’s not a mental health charity or campaign that doesn’t talk about stigma around mental health issues but these campaigns as important as they are don’t address stigma within the mental health community or internalised stigma.

Mental health services are generally seen as the Cinderella service of the NHS and personality disorders services especially so, people with borderline personality disorder are often seen as attention seekers, over dramatic and untreatable (the name personality disorder doesn’t help), people often find if they say they have depression or post traumatic stress disorder or bipolar they receive better treatment especially in a&e.

Trauma is a complex issue and most people agree that there is a lot of overlap in mental health issues that come as a result of trauma, complex post traumatic stress disorder is generally less stigmatised especially within the medical world, some people challenge or avoid being diagnosed with BPD because of the stigma surrounding it and barriers it presents whether it’s an appropriate diagnosis or not. There is a general attitude that everything someone with BPD does is for attention that suicide isn’t serious and they don’t really want to end their life, some people even believe that personality disorder diagnosis especially BPD should be scrapped and replace with CPTSD.

I don’t claim to be the authority on all things mental health this blog slightly more coherent than the general stream of consciousness and thoughts rattling around my head and I really try to only focus on issues I have experience of as it’s not my place to talk about a diagnosis I don’t have but so many of the problems with people’s attitude to BPD in particular are around the behaviours that come with the condition or the unpredictable moods and changes some of which do cross over with other issues but I generally seen as BPD problems. If we removed the diagnosis people would still self harm, they’d still have problems with mood changes and relationships; if we transfer those issues to another label would we not just be transferring the stigma?

Of course I can understand why people wouldn’t want a stigmatising disgnosis but when people seem horrified at the suggestion that their diagnosis being BPD not bipolar or other people suggesting someone clearly has BPD based on their actions or behaviour it really doesn’t help those of us that are diagnosed with it and doesn’t help to change the attitudes to mental health problems when even within our own community there’s so much division and stigma.

Being diagnosed with BPD was about as surprising to me as someone telling me I had blue eyes it was very much a bears shit in woods and the pope is catholic situation. In the 8 or so years since I was told I had BPD I’ve had many different feelings about it from relief and validation to anger and hatred to shame but although I wouldn’t necessarily say I’m proud of it I am open about my diagnosis and don’t hide it. I do believe that there should be more clarity around the various overlapping mental health problems and issues that stem from abuse and trauma but if there are going to be changes then we need to find ways of removing the problems faced by people with BPD and other conditions with heavy stigma rather than carrying them over to another condition.

Image credit Louise Firchau – paper panda 

Chronically commuting

A picture of me with London Underground roundel face paint

There are temporary toilets at Euston, fascinating I know but this meant walking from one end of the station to the other a minor inconvenience for many but something simple that ate into my already rapidly reducing energy supply.
If my body had a battery symbol it would currently be edging towards red, unfortunately I can’t put myself on low energy mode and I still have to get home. A simple thing like using the toilet or accessing public transport can become a mission when you’re disabled, people who live with chronic health problems and limited energy will talk about the importance of pacing (something I’m pretty bad at I am however an expert at crashing and burning) but along with pacing comes planning. Most people plan a journey especially if it’s somewhere unfamiliar or timing is needed but planning the most accessible journey involves more effort than a journey from A to B.

The standard London transport tube map

I’m not a wheelchair user and I can manage a limited amount of stairs so I’m less restricted than many other disabled people but the London Underground is not disability friendly (I’m not unaware of the age of the system and challenges in making it more accessible) but after working out where I’m going the next step is seeing if there’s a lift and whether that’s for all the station or just parts of it, is there a reduced escalator service (my balance and coordination and using a stick make escalators a challenge), if I get on a train part the way along the line can I get a seat, how far will I have to walk from the mainline to the underground. Often I’m tired before I’ve even started.

The accessible tube map

Energy isn’t just expended physically though, social interaction can be draining, thinking, talking, trying to follow the flow of a conversation can also be tiring especially when you throw in the neurological problems I have as a result of a brain injury at birth which left me with hemiplegia (I seem to have unknowingly won some kind of anti health lottery) all these things can add to fatigue and despite my  love of the city i can’t deny that Londoners are not the most patient people to be crammed on a train with.

People dismiss the idea of FOMO as another trivial millennial, Generation Y non issue but when you’re already several years behind your peers it’s hard to say no and slow down even when you should. Chronic illness, mental health problems, disability often do mean missing out of things or choosing one thing over another and in an age where we can see more and more of what people are doing with their lives without having to spend time with them it’s hard not to feel it.