Tuesday, 13 February 2018

Names, identities and hats

The eagle eyed of you who have followed me for some time may have noticed that while the blog name has stayed the same, my name has changed a couple of times. I guess name changes aren’t all that unusual on the internet but I think it’s time I told you why, and why it shouldn’t be changing again for a long while, if all goes to plan.

Hi, I’m Robin, I’m non-binary and agender.

So that line sums it up pretty well and I guess I could leave it there. But if I was in to perfunctory statements I wouldn’t have this blog.

First of all what does this mean. Let’s get some things about gender straight. Gender is a social construct. It is a method of labelling ourselves and others that was created within our culture and is shaped by our cultural norms and history. That’s why in different parts of the world the exact definitions of gender and the labels available can differ to our own. What we think of as masculine and feminine isn’t fixed from culture to culture.

But that also means that genders aren’t fixed definitions and it doesn’t have to be a binary state of male or female. There are many people who do not identify with either purely male or purely female and instead feel like they are something else. This is being nonbinary – existing outside of the commonly used binary system we have in Western culture. I should emphasize here that this isn’t just “not being like other girls” or “I’m not really one of the lads!”.  While those experiences can be a part of the nonbinary and trans experience they aren’t the whole deal and can and do form a part of the identities of people who have binary gender.

Pencil sketch of me by Jennie Gyllblad 

How do you know then that you are nonbinary? 

Honestly I can’t say. How you identify is personal to you. So let me tell you how I know and the process I went through.

This is a story of two halves and like the most edgy of modern fiction I will start with the latter half. Though I had heard the term nonbinary (NB) before and knew that there were people who were neither male or female, it was only a few years ago that it was a concept I really started engaging in and thinking about. I had a couple of friends who were nonbinary or who came out as NB and I found that it was entering into my sphere of awareness online more and more. It was the first time I really started to think about it. Listening to other people’s understanding and lived experience was key as there were a number of instances you could term “light bulb moments. Tiny light bulbs maybe but still, something in my brain was clicking in to place and saying “oh, that sounds familiar. Interesting”.

Additionally this exposure to conversations on gender encouraged me to consciously think about my own gender identity and what it meant to me. This is something I would encourage people to do, even if you are comfortably binary or cisgendered (or cis, means that you identify with the gender and sex assigned at birth).  Because we can only really know our own feelings about identity it is very easy to assume that what we feel is the default and that this is what everybody means when they say “I am female” or “I am male” or even “I am trans”. It can be a good exercise in self awareness to actually examine a little more closely what you mean when you think and feel these things and to consider them in comparison to other people’s experiences.

When I examined my own identity in this way I came to realise that actually I was nonbinary and it was a term I began to use to describe myself with close friends.

Now to go back in time to the first half of this process: this process of examining my own identity lead me to consider some of the experiences I had had since I was young. I reflected that I had always bristled at being described as a girl, female, lady or woman. It had been easy to dismiss this when I was a teenager: girl was too childish whereas woman felt too mature. “Female” can be oddly condescending and lady has implications of daintiness and certain feminine behaviour I didn’t embody. But I knew that while partially true, they had always been excuses, easy vocalisations of a deeper discomfort with being labelled as those terms.

I had, like many people my age, gone through a phrase of saying “I wasn’t like other girls” and “I was more one of the boys”. Now these phrases are trickier to unpack. There are definitely influences of patriarchy and internalised misogyny – when media shows women as weak, frivolous, vapid, dumb and generally lesser it’s not surprising that many young women (or people labelled as female) choose to push against this and distance themselves from the term. That was without a doubt part of my experience, but on reflection I was able to see that there were times I said “I’m not like other girls” because I wasn’t like other girls. I was struggling to identify with “girls” as a group and often felt like an outsider. I should note here that I went to an all girl school. There was a lot of opportunity for me to feel like an outsider and gender was only a part of it. But it was a part of it.

Let’s return to sexism and misogyny for a moment. Do you know how deeply frustrating it is to be the subject of mysoginistic slurs, or grouped in to statements like “well that’s what women are like” when there is a part of you, deep down and unvocalised, that knows you aren’t a part of that group? When I say “I’m not like that” it’s not just because I am rejecting the slur, the insult and the sexism, it’s because you’ve not seen who I am. You’ve grouped me in with a group you hate and I’m not even part of it.

There had been a little voice inside me, angrily shouting for decades, “that’s not me!” but never really understanding what that meant. If asked I wouldn’t have been able to tell you why I thought that but it didn’t make it any less present.

Associated with this was how I felt disconnected with various feminist movements. From Girl Power in the 90s to contemporary feminism I had often struggled to connect with it. While I could feel with a deep passion that they were needed and important, after all I had experienced first-hand many of the issues being dealt with, when people would put out a cal to women, or ask women to band together, I once again felt that vague sense of being an outsider. It wasn’t the naive “I’m not like other girls” any more but it was a “is this for me?”. The stronger the message of women banding together the more I felt excluded even though, to the best of my knowledge at that time, I was part of the target audience. Anything related to Breast Cancer Awareness was of particular discomfort and felt like a personal affront such was their all female message so strong.

Back to the present day, or at least those days a few years ago when I was exploring gender identity and a good friend said to me “When I get called girl or woman it feels like a cat having their fur stroked the wrong way.” . That was it, the final little light bulb in my head. That was the feeling. What I found interesting is that when I thought about being called male, boy, man or lad, it felt just as alien to me. Maybe not as aggravating because it didn’t have decades of lived experience and associated sexism attached, but still distinctly wrong. I was then fairly sure I was neither male nor female.

At first I started using the term nonbinary or NB, which can be a nonspecific umbrella term and genderqueer, which was a little more specific and is generally agreed to mean a nonbinary identity that mixes different aspects of feminine and masculine without being either male or female.  Bit by bit I started talking about this to different friends and using it as my identity and it felt good. I felt calmer and more sure of who I was than I ever had. I no longer had the feeling of being slightly out of synch with what people thought of me. Over time I have come to use the term agender as well. Agender essentially means “outside of gender” or to not have a gender as understood by our cultural definitions. I am still fairly flexible on which terms I use.

So what about the name changes?
Just as I had always had this vague feeling of being slightly out of synch with how people saw me, I had always felt somewhat that my name wasn’t quite right. The name I was given at birth was Sophie. It’s a lovely name, with a rich history. It is a name to be proud of and treasure associated with wisdom and inner strength. I honestly do think it’s a beautiful name.
But it was never my name.

Picture of me from 2011(ish) with cropped blonde hair and a vintage black hat

The hat analogy 

The analogy I use I use is hats that don’t fit.
Imagine you have been given a hat as a gift. It is beautiful, majestic, and handsome. But it doesn’t fit. Whenever you wear it it’s a little uncomfortable, maybe it doesn’t balance properly, always feels like it’s about to fall off, and maybe you worry it looks faintly ridiculous on you. It doesn’t stop it being a really nice hat, and one you are thankful for being given, but that doesn’t make it fit any better.
Now for some people you might be able to alter the hat, tighten the hat band and it fits better. That would be those of you who shorten your name or go by a nickname. The Robs and Steves, Kats and Dannis. You aren’t a Robert or a Bob, you are a Rob. You aren’t a Katherine, or a Cathy, you are a Kat.

But for some of us the hat can’t be comfortably adjusted or forced to fit. It still just balances awkwardly on your head making your faintly uncomfortable. Then one day you find another hat. You try it on just to see. It’s different to your first hat, but still pretty nice. But this one fits. This one is comfortable and stays on your head. You can wear it and not worry about it falling off or hurting. That’s what it was like when I started going by a new name. I originally chose Penn. It definitely fit me better than Sophie. It was easier to wear.
The thing was, though I used that online and amongst friends for over a year it still never felt quite right. I liked it but it wasn’t completely me. I knew I wouldn’t stick with it when I decided if I wanted to formally change my name. Even though I was increasingly irritated to have to use my original name in official places, I was reluctant to change to Penn.
I went looking for a new hat and I found it. Robin is the hat that has the right look. It suits me, it fits, it’s comfortable. Somebody else can wear Sophie and it will be the right hat for them. Bot for me, Robin is the hat that fits.

Now to clear up a few points 

Am I trans? Technically yes. Trans is the abbreviation of transgender which has the accepted definition of “a person whose sense of personal identity and gender does not correspond with their birth sex.”. In our society we take the sex assigned at birth, male or female, as the assigned gender. If you identify as NB then you don’t identify as the sex assigned at birth since it’s not even an option. By that definition a person who is nonbinary is transgender or trans. A lot of nonbinary people choose not to call themselves trans as their experience is different to people who are transgender within the binary, that is to say male to female (mtf) or female to male (ftm) transgender. Because the common usage of trans generally refers to people who are mtf or ftm many NB people feel that the term doesn’t include them. Equally some people who are mtf or ftm prefer that NB people don’t use the term trans as it can confuse and complicate the issues they are dealing with.

Personally I fluctuate on whether I use it or not and it often comes down to context. In general conversation I tend not to use it because of the common usage described above. However in some conversations and spaces it is appropriate for me to use the term trans. For example in conversations that are about the experiences of people who are not cis it is appropriate to use the term trans. I also participate in a trans and nonbinary swimming club and am happy to use the term trans when there as everybody there understands the terminology as well as personal experiences.

What about tansitioning?
Understandably because the words have similarities people sometimes think trans means “transition”. What a lot of cis people mean when they say transition is medical or surgical transitioning – genital surgery, breast augmentation or reduction, and hormone therapy. While these are routes that many trans people take they aren’t universal experiences even among mtf and ftm people. It’s a very personal decision involving some pretty major medical intervention. Some people may take it up whilst others choose not to or are unable to due to other health issues. The issue is even more complicated with nonbinary people who (like binary trans people) may experience little or no body dysphoria and don’t necessarily want to change their body. Some people who are nonbinary do undergo some medical transitioning, whilst others don’t. However it is a very personal issue and one that nobody is obliged to disclose to anybody.

What about presentation, and do I still look “female”? Well that depends on what you think female looks like really. Generally I am read as female. My particular body and face shape is associated with “female” in our society. Because it is acceptable for women to wear more masculine clothes (jeans and a sweater for example) but not for men to wear women’s clothing (dresses and blouses) even if I dress in a “masculine” fashion I am often referred to as female. This is aggravating but there is little I can do about it without a concerted effort. Additionally because our culture has developed the attitude that “male is default” there is a tendency for people to conflate “androgenous” or neutral clothing with male clothing. As I said earlier, I don’t want to be male. I’m not male. I shouldn’t have to make myself look more male in order to be not read as female. It’s frustrating. Plus I like leggings and skirts. They are comfortable.

However, and I want to make this very clear: I am not presenting as female. You may read me as female, and our society may associate parts of my appearance with femininity but that is not deliberate on my part. I am presenting as me and as nonbinary.

What do I call you? Robin. Or another nickname I guess. My pronouns are they them by preference but I don’t mind she/her, especially if you are my grandfather. I am not a girl, woman, lady or female or other gendered terms (again unless you are my grandfather or we have talked about it). If for some reason you need to state my gender you can say NB, genderqueer or agender.

But what is my sex? Usually when people ask this what they really mean is "what are your genitals". Honestly that’s none of your business. You can probably work it out if you need to. But really you don’t need to.

Tuesday, 23 January 2018

Cripple-Punk: when existing is rebellion

Cripple-punk, Chronic-punk, C-punk. Maybe you’ve seen these terms around, maybe you haven’t. But what do they mean?

[image description: a digital artwork depicting user ogrefairy - a fat  light-skinned wheelchair-user with a “The Future Is Accessible” crop top, surgery scars on her knees, reddish-purple lips, thin framed glasses, a dark brown bob cut, and a floral tattoo on her wrist. She is giving a peace sign and a gentle smile while sitting in a manual chair that has been decorated with purple and black zebra patterned tape. Matching forearm crutches sit behind her backrest. The background is Art Nouveau inspired abstract pale purple with a floral wreath of princess lilies and has flowers that match those on her tattoo. The whole image gives off a gentle, soft tone with layers of maybe assertive resilience built in.]

Cripple-punk can be described in a number of ways: a movement, an attitude, a lifestyle. It is all of these things. Tired of being pitied, portrayed as weak, incapable, lesser, and tired of being treated as fragile adult children disabled and chronically ill people are fighting back. Part of this fight is the reclamation of the word cripple once used derisively for those with mobility issues; it is now being said with a self aware pride by the very people it refers to. “Yes I am a cripple. What’s your point?”.
Of course not everybody identifies with the word cripple. For many it is still a word that carries social stigma and negativity, and for others it just doesn’t reflect their personal situation. So then the terms  Chronic-punk and C-Punk. From this point forward I will be using the term C-punk inclusive of both cripple- and chronic-punk.

Let’s turn briefly to the history of punk itself. Whether you believe that punk was spawned in the clubs of New York or the streets of London, what is clear to all is that punk was a reactionary movement. Punk developed as a reaction to and rejection of the orthodoxy. It was a rebellion against the sociopolitics of the mid 70s and 80s. It embraced anarchy, nihilism, dada, socialism and did so with an unbridled and shameless energy and aggression. It was a challenge to everybody to embrace individuality and push against normality.[1]

Since its initial inception as a subculture there have been numerous off-shoots, and further subdivisions such as hardcore punk, post punk and even pop punk that grew organically out of the original punk scene. Later, the term punk was used as a suffix for a number of sub-genres and cultures which were about subverting, challenging and changing the status quo of a given theme. Thus was born steam-punk (subversion of Victoriana), diesel-punk (mutations of the early 20th century), cyberpunk (subversive sci-fi and near future), and more recently solar-punk (eco futurism) and afro-punk (referring both to the contribution of black people to alternative and activist movement AND to a variety of solar punk that is centred on African culture related to afrofuturism[2]). These subgenres are largely arts based, developing from literature in to art, music, lifestyle and “aesthetic”. [3]

[image description: a digital artwork depicting a black person with short black dreads on the top of their head that are died orange at the tips. They are wearing short gray shorts that show pockets and a white bikini top and white lipstick. She has artistic, white prosthetics on her left arm and leg that are decorated with orange day lilies. The background is pale blue with a floral wreath of orange day lilies. They are muscular and seem to be very confident.]

Now that we have a mutual understanding of punk, let’s think about C-punk. If punk is about rebellion, subverting the norm and individuality how does that apply to chronically ill and disabled people, after all people of all backgrounds can be disabled? While that’s correct there are common experiences shared by many people with disability and chronic illness. Disability is rarely seen in media and when it is it is often a feature of a storyline designed to generate sympathy or as a growing point for an able bodied character. When characters are disabled that is often the primary focus and the character is allowed little characterisation or identity other than their disability. This spills over in to everyday life for many people – people with disabilities and chronic illness are often forgotten about (as evidenced by many buildings and events not thinking about accessibility at all) or reduced to a stereotyped collection of their symptoms and abilities. In real life it is common for people to be ignored, talked down to or infantilised as if any single impairment is enough to strip a person of their faculties and individuality. There is a stereotype that disabled people are either meek and quiet, eternally grateful for the things they can do and any shred of recognition they can get or, alternatively, we are bitter and remorseful, struggling to cope with our limitations and desperately wishing we were able bodied. There seems to be some sort of shame or guilt from able bodied people that encourages them to hide disabled people behind the curtain, because they don’t know how to treat them. This is lodged in the idea that a disability or chronic illness makes us somehow “other” and reduces us to a small set of experiences specifically linked to our health. It forgets that even though disability or chronic illness may be a big part of our lives (and trust me I can spend hours talking about health symptoms and medical research) it is not the only part of our lives and really we are as diverse as any group of able bodied people.

These prevailing attitudes have created a culture in which people may be ashamed to use the very adaptations, aides, medication and devices that actually help to improve our quality of life. There is a certain amount of stigma attached to using a walking cane, or crutches. Being a young person wearing joint braces encourages questions from perfect strangers and should you reveal they are for a long term condition, pity or disbelief. People are scared to take medication especially for anything relating to mental health or neurodivergence, but also things like pain relievers for fear of looking “weak” or of “giving in”. [4] Additionally, due to our current socio-political situation (in the UK and US at least) there is a fear that if you reveal you are disabled or chronically ill then you are faking it for benefits, scamming the system or simply put lazy.

Conversely and somewhat surreally there is also the (thankfully shrinking trend) of photographers and film makers using the trappings of disability – such as wheelchairs, crutches, hospital beds, and mental health stereotypes – as a backdrop and props for their shoots and films when they want to appear “edgy”[5]. In fact medical paraphernalia has been a stalwart of shock and horror media since the 19th Century, and shockingly the attitude and acceptance of this is only just beginning to change. Once again this “others” people who are actually disabled or chronically ill turning their daily lives into a boogie man or piece of set dressing. In some cases it may lead to people choosing (or being forced to in some cases) to hide their disabilities in order to avoid bullying, harassment and stigma.

C-Punk therefore encourages people who are actually disabled to embrace their disabilities and to show the true face of disability and chronic illness. If the social norm and status quo is to shame and hide and to strip disabled people of their individuality, then it is a punk act to wear a neck brace proudly, to decorate crutches, to be seen, to say “I am here, I am disabled, and I am just like you.” .

[image description: a group of five individuals of varying gender presentations. They are a variety of body sizes and are dressed in a mixture of styles. One individual is using crutches, one using a walking cane, one appears to be wearing wrist braces and a fourth is wearing headphones. The background is lilac with a wreath of pink and lilac orchid flowers. The title of the piece is "My MentallyIllPunk Famiy"]
It subverts the trend of humble gratuity to both accept and acknowledge ones illness but also to talk out about the difficulties we face. At its most simple C-punk is an aesthetic that does not hide or diminish disability and chronic illness and encourages acceptance or even pride rather than guilt or meekness. But for many it is more than that. It is a socio-political statement and a movement. As long as disabled people aren’t seen as individuals it is easy to dismiss and ignore their rights, ignoring accessibility laws, harassment, the stripping of benefits in a manner that the UN has seen fit to condemn[6]. By, in true punk fashion, making a scene, shouting out being seen and being heard cripple punk forces those who have previously brushed aside the reality of disabled people to view us as real people; real people just like them who may, just possibly be deserving of fair treatment.

In some cases the aesthetic of C-punk bears resemblance to the original punk looks: it is certainly popular with people like myself who are brightly haired and tattooed. But it is not the preserve of the alternative millennial (yes I am 32, yes I am a millennial, I was 15 in 2000) simply being openly, honestly and unapologetically disabled or chronically ill in public is an act of defiance and punk rebellion in our society. Not accepting shame, belittling, lesser treatment or discrimination is a radical and punk act.

Not all who confidently and unashamedly live their lives with disability or chronic illness will label themselves as C-punk and some may have never heard of the term(s). But in a world where existing as a minority is a radical act, they are acting in the spirit of C-punk just as much as those who bear the label. When you see somebody embodying the principles of C-punk, take note: realise that not giving in to outdated stereotypes and pressures is a choice and not always an easy one. We are not your inspiration but we are to be recognised.

All illustrations are by Ogrefairy at Ogrefairydoodles on Tumblr and are used with permission

[note: If you do experience shame, doubt, frustration and other negative feelings about your chronic illness or disability that's ok. It doesn't make you any lesser or any less C-Punk, at least in my eyes. A week does not pass by where I do not feel some frustration or inadequacy over my own health. You aren't alone, you still matter.]

[1] https://unireadinghistory.com/2013/09/04/punk-politics-and-youth-culture-1976-84/
[2] https://www.theguardian.com/culture/2015/dec/07/afrofuturism-black-identity-future-science-technology
[3] There are long debates to be had about how relevant the “punk” suffix is to a number of these subgenres and many arguments about the validity and actual definitions. That goes far beyond the scope of this particular blog post.
[4] See this great article on disability as “inspiration” in which a lot of value is placed on “overcoming” your personal difficulties, preferably without the aid of medication. https://www.abilities.com/community/inspirational.html
[5] http://www.kaltblut-magazine.com/editors-pick-elizaveta-porodina/
[6] http://www.independent.co.uk/news/uk/politics/government-spending-cuts-human-catastrophe-un-committee-rights-persons-with-disabilities-disabled-a7911556.html

Monday, 25 December 2017

Guest Post - The Year End Festival

[Today's very special seasonal post is written by Mark Tynan (my father) on the subject of how we celebrate this time of year. Whatever festival, if any, you are celebrating this time of year Seasonal Greetings and may it be as good as it can be.]

Before I go into the elements and details of my desire for the introduction of a new annual festival can I just say I am not being disrespectful to Christians and their celebration of the birth of the son of the God they worship. They have a right to their belief and worship and I acknowledge and respect that right. Also, I am not looking to get rid of Christmas but I am looking to begin a non-religious alternative to it; and here’s why.

I am irreligious: I do not, and have never, followed any religion nor worshipped any God. So, as a non-Christian for example, I cannot, and probably should not, celebrate Christmas from a religious point of view. Similarly, I might say that I cannot celebrate Ramadan, Yom Kippur or Diwali, as I am not Muslim, Jewish or Hindu.

But the thing about Christmas, and I wonder if the Christian community might agree with me here, is that it has been taken over, in the last 150 years or so, by capitalism and its religious value has been eroded or lessened, maybe even removed. Ok, Christ was given gifts by three wise men so I can see the basis for the tradition, but these days, major retailers, I feel, don’t urge us to buy gifts on that basis, but instead to boost their annual profits by a considerable amount. Black Friday for instance; does that get a mention in the Nativity story? I think not. Then there are the many TV ads which imply that purchasing from a particular business will enhance your Christmas experience. Quotes ‘Christmas: Morrison’s makes it!’ Sky Sports ‘Christmas is for football!’ (something I had never realised before!), ‘Play happy this Christmas – Gala Bingo’, and so it goes on and on. I might, therefore, urge the Christian community to take back Christmas Day for themselves.

Which leads to the idea I have for the Year-End Festival (YEF) which would not replace Christmas but would call on, and allow anyone to take part; people of any religion or none, people from all ethnicities, the young, the old, all genders, heterosexual and LGBTQA, etc etc. So, YEF runs from Dec 26th to Jan 1st, inclusive, with the advent of the New Year being its climax and there are three elements to it that I relate here.

v  Firstly, I would like it to be seen as a chance to strengthen our society. Obviously, I encourage people to come together with family, friend, partners etc to celebrate the coming of the New Year and to exchange thoughts and feelings on what has occurred during the near-gone year. But I would also hope that there could, or would, be more coming-together of the different groups of people which make up our society to gain understanding of the different views of life and the world that we all have. For example I, as a political left-winger, am happy to befriend those with alternative political viewpoints, discuss matters with them and gain an understanding of their stance, even if it ends with us agreeing to disagree.

v  Secondly, I would nominate one of the seven days of YEF to be called Reflection Day (But not the Festival’s 1st day or last). In the words of the Greek philosopher Socrates ‘An unexamined life is not worth living.’ I couldn’t agree more, and the chance to develop our self-worth, self-esteem and to build our set of ethics and moral values is, I think, one worth taking. So, what happened in these last 12 months of your life? Are you happy and proud with the way you responded to and coped with issues, people and situations that you faced? If yes, then the YEF would not just be a celebration of the New Year but also a personal celebration of the human being you are or have become. Or is there something in that 12 months which brings feelings of regret or shame to you? Did you not handle a situation very well? Could you have treated somebody a bit better? Reflection Day, I feel, would be an opportunity to establish and examine your strengths and weaknesses and perhaps resolve to enhance yourself in some way and become able to be proud, in the future, of the compassionate, ethical, inclusive human that you have become. It’s not the easiest thing to do, but I am happy to say that, over the last few years, it has worked for me!

v  And finally, the tradition of gift-giving. On the one hand I want it to continue. Everyone (hopefully) knows the love and delight involved in giving and receiving gifts. It can make our children very happy, it can deliver a message of love to another person and gifts can enhance, brighten of improve our lives. But on the other hand, and I think I’ve already got this message across, I don’t like the idea of big business using the festive season to make enormous profits. So, what’s the alternative? Well. I would suggest that all YEF gifts be bought from charity shops. Now, in an ideal world there would be no need for charities – the people, the businesses and the government would all come together to deal with the issues which charities take on. But this idyll is unattainable in the world as it is. Therefore, buying all our gifts from charities would inject a considerable amount of money into the world of need rather than the world of profit. Big business would survive this, no need to worry about them.
So, enjoy the YEF 2017 and I hope that 2018 brings you more happiness, friendship and self-development.

[editors note: Personally I would extend point three to include handmade gifts and those bought from independent sole traders but I also understand and support my father's premise! Though it could also feasibly argued that many saved by not buying traditional Christmas gifts means people can afford to buy special items from independent makers at other points during the year, so their livelihoods may not be impacted. My opinion may be skewed by being friends with several independent maker/traders.]

Tuesday, 19 December 2017

The Charity Dilema

Recently I have been having a problem with charity. Not in the way you way think. Sure the “chuggers” who stop you every five metres in the street are annoying and nobody really likes somebody knocking on their door during teatime.  But that’s not my complaint.

My issue comes from the fact that we need to rely on charities so much at all: that there really is a desperate need for charities to raise more money because they need to spend that money and help people. Whether they are small local charities providing overnight shelter for rough sleepers or medical research charities investigating a disease, that’s what they are for: helping people. An enormous amount of scientific breakthrough comes from charities and that knowledge goes toward being able to adequately help, treat and care for people with illnesses as diverse as heart disease to rare cancers to narcolepsy. It’s important and valuable work.

Recently I have noticed that charities are in need of more and are having to appeal more often, especially when it comes to frontline services such as housing or mental health support. Charities are desperate for the funding to be able to continue providing services which are being stretched to the limit. Of course those who can donate are. The generosity of people in doing what they can to help others has been phenomenal. It is clear to most of us that things are pretty rubbish in this country for a lot of people right now, and we need to help in any way we can.

What is upsetting me though is that this altruism and giving nature is, I believe, what the Tory government is counting on. Back in 2010 it became a cornerstone of Cameron lead Conservative politics as he pushed for “Big Society”. In part this was associated with things like the push for changing the way schools are run and the opening of more Academies which were privately funded. In practice though the concept of Big Society means that is falls on the general population to look after each other. On the face of it that doesn’t sound like a terrible thing. After all we would all like to think that we are caring individuals that will help each other out when we are can. There are a couple of problems though.

We aren’t just talking about a few small acts of kindness here and there. Big Society is less about lending your mate a fiver when they are short at the end of the month and is more about creating the infrastructure to support social needs from housing to education to health care. These are big demands that can never be taken on by individuals but that need vast amounts of cooperation, skills and organisation.

The second issue is that it leaves it up to the individual as to how and whom they will help. And why is that an issue? Because some people just aren’t as caring as others. Additionally some aren’t as generous as others while of course some simply don’t have as much to give. It has been shown in a number of studies that while people on a large income may make larger individual donations, it is low income people who are more likely to give regularly and to give a larger percentage of their income to charities. Even without the economic split it’s clear that there are some people who are always going to be more inclined toward giving than others. This means that when charities are being relied upon to fill the gaps in social care and infrastructure, the money to make this possible is only coming from a small percentage of the population, while the services, care and resources available are available to all. It becomes a great source of inequity and some may say adds insult to the injury that sees lower income people proportionally taxed higher than high earners already.

While the emphasis currently is on frontline services or services for at risk groups – homeless charities, refugee support, foodbanks and so on – there are those who may think that they are never going to be in need of those resources. But as many of us know nothing in life is certain and unexpected expenses, sudden ill health or injury, loss of a job and many other personal catastrophes can leave you in a position of needing that help. The help and support of charities really is for everybody.

But it’s not just those front line charities which need our financial support. Charities which carry out research into everything from understanding and treating cancers to climate change are struggling. In recent years the government funding for scientific research as well as a number of other policies have meant that research groups have been struggling to continue with studies and projects. It’s easy to feel cut off from this science unless you take a particular interest or are in a STEM industry yourself but in truth we often benefit in ways we don’t realise. Everything from novel materials that can be used in manufacturing, climate studies that help us predict how we can keep ourselves and the planet healthy in future years and of course biomedical research that can literally save lives (or just vastly improve them). All of this requires money. If it’s not coming from the government it has to come from private investment (which can only go so far and may impose bias), or charitable funds and foundations. It’s a limited pot of money and already difficult for research teams to make successful grant applications but it’s often the only real source of funding for many researchers. Of course when financing is limited it is not unexpected that the grants will go to those seen as most in need. That goes for both those awarding the grants and those donating to charities and foundations. The problem is that it’s very difficult to decide what has most worth, what is most in need and what is a good “investment” of our donation. A cure for a rare cancer that could save thousands of lives or better understanding of a non-fatal but life-limiting chronic illness that could help even more. In reality both are valuable. Just as the research into electronics, robotics, energy, agriculture, psychology and many more areas are valuable in different ways.

When the funding isn’t coming from the government and is instead coming from the public we are left with very difficult decisions to make and ultimately some area will suffer potentially leaving a legacy for generations to come. It is beyond doubt that finding a new treatment that helps save lives is important and needs to be done but we have to acknowledge that that may come at the cost of staying competitive in manufacture, engineering computing and emerging economies.

There are some big implications here. It means that the responsibility for looking after people, our health, the general infrastructure and the future economy is being pushed onto the shoulders of charities. This in turn means that the ultimate fate of this myriad of issues is down to us, those who donate. We are left with no option. We have to donate because if we don’t people will suffer. There is clear evidence of this in the newspapers, in fact on our streets, every day. We have to donate because we want to see a future where things get better. We know every time we a few pounds here, the last of our coppers there, that there is a desperation in our country and it is down to a minority with both a social conscience and the means to do so to try and make things work. It’s clear that those at the top, those who are supposed to legally have a responsibility as well as those who could afford to do more, are letting us get on with it. They are taking advantage of our generosity, our desire to help good causes and people in need, our tendency to give back to those who have helped already to say “Thank you.” for efforts done and to pass it on to future people in need.

I will be giving to charity this Christmas, both national organisations and on a more local level, but it upsets me both that the need for this generosity for is increasing and that with every donation we are “proving” that the Tory experiment of Big Society works. Not works in a meaningful manner in that all sectors of society take care of each other equally, everything is adequately funded and infrastructure, investment and core social care is managed by the Government, but works in a sense that people will do their best to fill in the gaps where they can and that the impression of caring and generosity will make up for any lack in real provision.

Do give to charity, please don’t stop. But equally do contact your MPs and ask about where funding is going. Do ask about fairer taxation and query why so much time and money is wasted on raking back pennies from social care while large corporations avoid tax by the billions. It’s just another way of showing people you care and of making a difference. We need charities, but we need a government that actually works for us far, far more. 


Tuesday, 19 September 2017

SmartYellow - more than a book review

This isn’t strictly a book review but I feel compelled to about this book, SmartYellow by J. A. Christy. [contains mild spoilers]

This book has been haunting me since I finished reading it over a month ago. Book hangovers aren’t uncommon but the extent to which this has got in to my brain is something different and I feel compelled to explore this further. As much as this explores the book this post is a commentary on the current welfare state in the UK.

I’m not unaccustomed to enjoying books that can best be described as “a bit grim”: dystopian AUs and contemporary noir are my jam. SmartYellow definitely fits in to that category. 

A brief synopsis: SmartYellow is set in a recognisable Britain, the part of Britain that never really makes it in to books or on TV. SmartYellow is primarily set in a council estate. It follows the life and struggles of a single mother who find herself far out of her middle class comfort zone and struggling to survive on a notorious estate. When an Olive branch is offered to her she takes it and does her best to make the best out of what is increasingly clear to be and terrible situation. Getting to grips with government surveillance and finding out that her tasks are part of something far deeper and more sinister than she first thought.

The science of SmartYellow is subtle and not described in great detail only alluded to in layman’s terms. The source and real power of the technology isn’t explored in depth rather focussing on the impact of how it is used in the real world. It isn’t a lot but it is just enough to push SmartYellow in to the realms of sci-fi and an uncanny valley alternative universe where control of “undesirables” is far more insidious than we would like to believe.
This is a book about choices. It is about hard decisions and what you do when you are caught between a rock and hard place. It’s about Us and Them, our prejudices, our boundaries and how far we will go to save ourselves. And it is brutal.

Perhaps you are starting to get an inkling of why this book affected me so deeply. To start with the setting is meticulously describes and painfully familiar to many of us. An ordinary unassuming town it has its posh bits, its comfortable middle class suburbs, a bustling centre, some working class streets and then, pushed to one side, the council estates. Run down clusters of maisonettes and blocks of flats segregated from the rest of the city. The people who live there are marked as different. They are outcasts from the town. They are considered by everybody off the estates to have failed in some way, to be lesser, to be beyond help and in some cases deserving of all that they have to suffer.

 J. A. Christy’s descriptions are raw, clear and without shame. You feel every ounce of the grey and pastel prison that surrounds you. You feel the fear and desperation. What Christy has done is make us face head on and eye to eye the reality of these estates and how some people are cut off from society. It’s a difficult lesson if you’ve never been forced to think about it and for those who have had to think about it, have experienced it or come close its painful reminder.

Outside of the book this country has a problem with poverty and with the working poor. Though we have a benefit system it is clear to almost everybody that it is brutally unfair and often sets people up to fail. You have to be able to apply in the first place, you have to be able to jump through hoops of bureaucracy to even be accepted and in many cases you then have to continue with these circus trips to attend meeting, fill our form after form and behave in a way which is defined by an anonymous body. This would be difficult for people even in ideal circumstances, but in reality most of the people who have to apply are far from in ideal circumstances. They are already poor, already struggling. They often have substance abuse to deal with. Many come from abusive and broken homes and do not have a support network around them. Some of us are ill and disabled. Others have young children or family members who need care. Often there is a lack of education or literacy that holds people back. But there is no support. All are expected to jump through the hoops and perform the arcane rights necessary to get enough money that they can eat but that keeps them firmly under the poverty line.

Some of us are lucky, we find ourselves in these situations after we have had a chance to thrive. I cannot work and apply for PIP but I am “lucky” in that I have a support network of good people around me who can and will help. I am “lucky” in that I have a middleclass-ish background and have that to draw from. I am “lucky” in that I had the time and means to go to school, do my A-levels and go to university. It makes it easier. Not so easy that I don’t end up in tears and have panic attacks having to deal with the DWP. Not so easy that I can live comfortably and don’t have to worry about money. Not so easy that there haven’t been periods where I would eat less and less so my money would stretch further, that I would lower the thermostat to 14.5 degrees in the winter and just pile on sweaters and scarves to keep warm to save precious energy. But I am still, relatively speaking lucky.

One such element of my “luck” is that I have never had to apply for social housing. Because with that instantly comes stigma. It shouldn’t do. So many people find themselves in a situation where finding a house to rent with their budget is impossible as private landlords buy up home after home and inflate prices. As old buildings are refurbished into “luxury apartments” that house only a few but charge more than many can afford. As inflation and house prices push more and more people into previously undesirable neighbourhoods and who can afford to rent and buy when the people who already live there can’t and have to move out. Social housing is important. It helps people: people who are working full time on minimum wage; families with dependants who struggle to make ends meet; single parent families; disabled adults. They all need somewhere they can call home and they can live safely without fear of becoming homeless or anything else bad happening to them.

However, instead of seeing council housing and council estates as good places for people who need them, in our society council estates and other social housing is maligned. They are treated as the place where the lesser dregs of society are swept off to fester. The stigma is such that even ex-council estates, those which have been bought up in the right-to-buy rush of the 80s and early 90s and are now largely privately owned or privately rented, are scorned, have less market value, are avoided, treated as trouble spots, and bad areas. Sometimes of course they are. I can’t deny that places like The Noctorum estate on the Wirral were violent and rife with crime. When I said I was moving to the satellite town I now live in people sucked in their breath and warned me away from an estate that had a history of crime ranging from gang fights to burglary. There is often the question though of do these places have these problems because the residents are in need of social housing, or do these things happen because of how broader society treats the people who live there.

Perhaps it’s a bit of both. The language used is telling and difficult. Them versus us. Them and not me. They are other. These are the struggles and difficulties that Christy picks up on wonderfully in SmartYellow and she uses the language of They and Us to great effect putting up barriers both metaphorical and more sinister between the in group, the safe space of The Town, and the out group, the squalor and fear of the estate. This is the first way that this book grips you and gets under your skin: the uncomfortable notion that quite probably you can’t help yourself from thinking in terms of us and them; that try as you might you have placed yourself in “us” and talked about “them”. Even if your words have been compassionate there is always the barrier. The realisation or recognition that we are a part of this horrible dystopia that we are reading about is sickening but difficult to pull away from, because now you aren’t reading a story, you are reading something that is achingly familiar and a part of your own world.

This dichotomy between “us” and “them” is a repeated motif throughout the book and something you can’t escape from. It forces you to examine your own prejudice and your own feelings on the subject again and again from every perspective asking yourself “who am I?” and “where do I draw my line?”. It is a brutal test of your own ethics and morality.

I had a further struggle reading this, a struggle that is far more personal and that not every reader may come up against. I am on benefits. I am on (well sort of I’m in the middle of the appeals process) PIP. Previously I was on DSL and ESA[i] and in receipt of housing benefit. I was with a private landlord but my housing was supported by local government. I was one of them. I am one of them. As I described above, I have felt many of the associated struggled. Furthermore I can’t work due to disability. At least not any sort of regular work that is valued and recognised as employment by our government or vast swathes of our country. I am not seen to contribute value. I am not productive. I am a dead weight who does not contribute. I am a burden on society. This is a rhetoric I can barely escape as it appears in new stories, parliamentary debates, TV chat shows and overheard snippets of general conversation on a nearly daily basis. The paperwork I endure to be allowed a meagre sum that amounts to £3.03 a day is full of questions and statements meant to remind me and test that I really deserve. I have literally been judged, and judged negatively I may add, for being “well presented”. I must perform a pantomime that shows that I am in desperate need but also that I am grateful and trying hard enough. I must be perky happy and wanting, but also in difficulties to the point of no basic hygiene. I am supposed to stay within an ill-fitting cage that I may be rewarded with my £3 a day. Do too well and your money is stopped. Save up a little, just enough to feel safe, and your money is stopped. Manage to find a few hours irregular work, far from a manner able to support yourself and your money is stopped. Fail to attend a meeting because you are sick, starving or, god-forbid have a job interview and your support is taken away.

My situation may be more comfortable than the life of the central characters of SmartYellow but I am far, far too conscious of the constant scrutiny from those who have control. So a world that is crafted to have even more control, more surveillance, to subtly infiltrate your lives and not only make sure you are playing by the rules that allow you to eat but also making sure you never stray from your allotted place is all to easy to believe.

The advanced technology of SmartYellow may not exist (probably) but that does not mean we can’t imagine more mundane methods for creating Zones and ensuring that people stay in their place. We already know that it is more difficult for people with a social housing address to get a job, for those who are out of work for long periods to find employment. We know that people with prison records, no credit and disrupted housing continue to struggle for employment, housing and even healthcare as people judge and weigh the elements of a person’s past. It’s not so hard to imagine that there may be a list of blacklisted addresses and postcodes hanging in an HR office or letting agency. It’s not hard to imagine that police respond differently to calls made in certain areas. It’s not out of the realms of possibly that on some desk in some forgotten about council office there are a series of maps with lurid yellow lines traced around the boundaries of the areas where They live. We can’t pretend, also that eugenics has never been discussed and researched[ii][iii], even carried out in places as a method of population control for those deemed undesirable[iv].

I finished reading the book with a sense of acute paranoia. I knew intellectually that the scenario created by Christy was, though based in reality, fiction. I knew it was speculation and not fact. And yet, the very real sense of always being judged by some governing body or other was inflamed and made a magnitude worse. If they are treating us like this now, think what else they can do if the technology and opportunity ever arises? What of failed experiments and pilot schemes? Would we ever actually be told about them? What if the eugenicists never went away? What if things really are getting worse. Will I be able to satisfy the criteria that keep me from being labelled an “undesirable”? Really do I want to be on that side of the divide? How do I see myself, who am I and how do they see me?

So many questions and so few answers, at last none that I was satisfied with.
The real thing that left me shaken and melancholy from reading SmartYellow was a real, deep and darkly certain feeling not that this could happen, but that it already is happening.

Christy created world where choice is everything, where lack of choice and desperation is what sets us apart. A world where we can shut up and accept the status quo, fight for the scraps we have and be satisfied or push against them and risk losing it all. Is that not the world we live in?

I desperately want to recommend this book to people but it comes with a warning: it might leave you feeling like shit.

[i] PIP (Personal Independence Payment), DSA (Disability Support Allowance) and ESA (Employment Support Allowance) are all UK benefits/social security. PIP is being introduced to replace DSA. It is administered by the DWP – The Department of Work and Pensions, which is a department of the UK Government.
[ii] For example Lee Kwan Yeu in the 1960s http://www.blynkt.com/issue-1/eugenics-in-postcolonial-singapore,
[iii] Exceprt from Richard Dawkins http://www.heraldscotland.com/news/12760676.From_the_Afterword/
[iv] Short article detailing some of the forced sterilisation and euthanasia of “undesirables” in the USAnhttp://www.sfgate.com/opinion/article/Eugenics-and-the-Nazis-the-California-2549771.php

Wednesday, 23 August 2017

But really, those costume choices

Part two of my costumes-in-sci-fi-and-Valerian rant

If you have read my earlier post “Limitless clothing choices and you pick that” you may have noticed I have some opinions about clothing in scifi and was set off on this instance by my viewing of Valerian. I promise you this post no my earlier post contain spoilers for Valerian if you are still holding out hope of seeing it. Nothing you won’t have seen in trailers or posters anyway.

Last time, I looked at military uniform and the gender disparity which was at least 30yrs out of date and could have taken a lesson or two from Star Trek: The Next Generation’s somewhat sarcastic approach1.
Front Star TrekTNG season one. They didn't always wear leggings either. Sadly they ditched this in season 2.
I also questioned how we approach the design of alien clothing, being mindful of real world censorship without enforcing Western morality on an alien culture. Valerian while not the only perpetrator of such fallacies did prove itself to be almost a step by step guide to the worst tropes.
This week I’m examining two more of those tropes: female armour and a strange fascination with antique clothing.

Do boobs give you extra hitpoints

I briefly hit upon the issues with female armour in last weeks post and noted in the footnote that the issues of “boobplate” and ridiculously gendered body armour are superbly handled by BikiniArmorBattleDamage on tumblr. That still stands and I urge you to check out their blog, look at the examples and read their commentary for a far fuller picture. I don’t think I could really let the armour choices in Valerian go by uncommented on, not when it is such a blatant example of the trope and does so without any apparent self awareness.

Before we go any further I should point out that yes, there are far worse examples of female armour out there and yes, I suppose we are ‘lucky’ that she has trousers. But I can’t help but notice one major feature of the female armour design that makes me think that the costume designer (or executive decision maker) was thinking less about how armour works and more about the old fallacy that sex sells2. Boob plate: solid, separate cups that sit over the boobs leaving you as to no doubt of the anatomy of the wearer. In contrast, male identified characters get a breast plate, which may have some definition over the pectorals but is rarely molded or as distinct as that on female armour. The arguments for boob plate are that it provides support and space for the breasts. The arguments against boob plate largely come down to “that’s not how armour or boobs work”.

In some contexts it may be appropriate for the breast plate of a character with breasts to have distinct cups. If there’s is a society in which bared breasts are a sign of strength and virility, as for example a well sculpted male chest is often treated, then having formed boob plate may be appropriate. If the society is one in which women are seen as strong and revered, the body is treated with respect and is neither over sexualised or considered inferior, then again, moulded cups may be the preference of some soldiers and may not stand out as odd. In our world, that’s not the case, and in the world of many sci-fi films,including Valerian, we aren’t given any context of that nature. Instead, the moulded cups are merely there as a visual cue in case we forget which one is female.

The costumes are form-fitting for all characters that’s true, so some shaping is necessary for a good fit and movement, especially if the material is rigid. But it’s this rigidity that poses another argument against boob plate: if the armour is curved steeply inward toward the body, as boob plate is around the sternum, then a) you create a pressure point where those hard edges and joins dig into the body, potentially harmfully and b) you also create an angle that literally guides projectiles and other hard items toward the body. That’s two things that armour absolutely should not be doing.

I don’t expect fantasy and sci-fi armour to be completely realistic plus many sci-fi franchises use lasers which overcomes the directional problem which means we should be allowed some artistic allowance and not be restrained by physics and material science at all times. Additionally, actual real historic armour worn into battle and in tournament was often heavily decorated with elements that could prove to be dangerous to the wearer. The difference though is that that decoration was very much a personal preference and display of strength and personality3,4. Boob plate is not, it is the repetition of a tired trope by a production team. It isn’t a creative icon of a fantasy world, it is the same old thing we have seen everywhere else and it serves very little purpose.

The antique clothing fetish

This particular point is much more directly linked to Valerian, though there are other films which fall foul, and it’s how much of the clothing is not just inspired by, but directly taken from human history. Valerian is set 500 years in the future and is mostly set on “The City of a Thousand Planets”, a universe spanning multicultural. We know that fashion is somewhat cyclic, that magazines will tell us how “the 90s are back!” how similar patterns of silhouettes repeat and for some, the 70s never really ended. But for a citizen in The City ... to wear clothes not just inspired by but lifted almost directly out of the 2000s would be like people routinely wearing doublets and hose or stiff fronted gowns and ruffs. Are we to suppose that in 500 years clothing hasn’t changed at all, or does this film just happen to focus on a group of highly dedicated reenactors who dress in costume at all times and are considered a little odd?

People (well me at least) had high hopes for Valerian with it coming from Luc Besson, writer of cult and blockbuster classic Fifth Element. Fifth Element has aged phenomenally well, key amongst its success the visual aesthetic and the costuming provided by Jean-Paul Gaultier. Though the influences are apparent, and any fans of Gaultier could clearly see his hand at work, the costume created a society and culture that was different, clearly influenced by the new and novel worlds and technologies of the setting to say nothing of the creative entertainment and celebrity industry. Valerian instead had Miami beachwear and faux Victoriana. It was lackluster. Even without the dazzling highs of Fifth Element to live up to it would have been markedly lacking in creativity.

As I said at the start of my first post, costume isn’t just about dressing your characters but about bringing to life an entire culture and setting which we only get to see a limited snapshot of. If your costume is recreations of vaudeville and your average uni-campus but it’s set in space, what are we learning? Well nothing much. The only conclusion I could draw from the Rhianna showpiece as Bubbles, shape-shifting supposedly to match the desires of her “client”, is that Valerian (the name of the main character from which the film takes it’s name) has a deep and abiding fetish for antique costume. Because if it’s odd that a film 500 years in the future includes items that are common now in 2017, it is even more bizarre that it would showcase and dress its characters in facsimiles of Victorian showgirls, 18th Century gowns and 50s pinup. It makes no sense either in the setting or for a sci-fi film: this isn’t Captain Janeway in her Victorian holonovel, this is supposedly people living their everyday lives.

To put that little care and thought into the creation of the world is evidence that too much attention was given to exciting space battles and sweeping vistas and little, if any, was given to the actual world that these characters inhabit and want to save. And if the world is poorly developed then it is no surprise that the characters are less than fully formed and floundering through the plot.
Not only that but it’s a disservice to the audience. It assumes that the only thing we would be content with or accept are the same visuals that are trotted out time and again. Additionally these are styles and visuals that are commonly linked to sex work and titillation in the here and now - we haven’t lost our fascination with the allure of a 50s pinup or Victorian brothel. Of course if we really think about it we know that these are rose-tinted images and that a myriad of social problems from misogyny to poverty are intertwined with these vintage pastiches of sex. To tie them to sex work in Valerian then is to divorce these pretty ideals even more from their roots and to, as with the clothing of aliens, force some very 21st century western morals on to what should be a far more exotic and different place indeed.

To reiterate what I said at the start of the last post on this topic, costume actually matters in film and TV. It is one of the devises that should be used to tell us about the setting and society. When it is done well it can be seamless and we can be transported to another culture. When it is done badly it instead tells us about the culture of the producers and directors. Often instead of our sci-fi being exciting new realms of possibility, we are reminded that the film is just a part of the status quo, nothing new and exciting, just a sad reflection of the world we are already living in.

Valerian got it very wrong, though I doubt it will be the last to do so. 

1Not that TNG got costumes perfect or dealt with sexism particularly well, but that was thirty years ago and I’d like to think we’d moved on

2The idea that sex sells is not as cut and dried an issue or a truism as you may think

3It has to be a very well crafted and clearly shown story for “it’s the character’s choice to have armour like this.” an argument which falls apart even more quickly once you consider this is a military uniform,not personal clothing.

4For some excellent examples of discussion of how LARPers might chose to wear armour which curves around breasts, read this article from LARPHacks

Wednesday, 16 August 2017

On vulnerability

NB: this post was first written several weeks ago but not published due to tech issues. It remains relevant though some of the specific things referenced may have moved on.

This is a difficult topic to write on but I think it’s time I took a stab at it.
This is more personal than many of my posts, but it’s important.

What or who do you think about when you hear the phrase “vulnerable adult”? An elderly person, frail and memory failing? Somebody with severe learning disabilities, or a developmental disorder that leaves them cognitively impaired? Well yes, those assessments aren’t wrong. But that’s not the whole picture either. Because, it turns out, you can be a 32 yr old with a high level of education, who has been able to hold down a good full time job and you can be or can become a vulnerable adult.

Over the past couple of months we have been moving house and carrying out some minor renovation on the new house. This has meant that for the most part I have been sat in the house by myself letting in and dealing with a succession of builders and contractors, energy salesmen and council representatives. Plastering, roof, flooring, internet, energy, water ... The list is endless.

Moving house is of course exhausting for anybody. It’s a big job and it’s stressful. When, like me, you have a chronic illness it becomes a ridiculous feat. I have been in a state of exhaustion or weeks, struggling to stay awake, in screaming agony on some days, vertiginous and migrainous, woozy and with a brain fog which deserves its own slot in the shipping forecast. It’s a slog to get anything done as every little bit of exertion needs to be quickly balanced out with rest. Needless to say, this isn’t the best state to be dealing with strange people and negotiating business.

Crashed out on the sofa with fatigue and pain

It took me a couple of weeks of rising anxiety to realise that it was because, for all intents and purposes even if it was not an official diagnosis, I was in the position of a vulnerable adult. My anxiety was the fear that I was in a position of powerlessness, that I could be taken advantage of (financially if nothing else) and wouldn’t have the wits or wherewithal to do anything about it. I have had to open my door to strangers, invite them in to my house and hand over money and trust that I will be safe and that they will be honest and kind. That’s a tremendous ask. We would like to think we live in a world where this trust is inevitable but instead we live in a world in which we know that scams happen. We know that people are ripped off. We know that some contractors can swindle and cheat. We know that inviting a strange man in to your home is a risk. These are calculated risks that any adult takes.

But as an adult who is struggling with cognition, who is struggling to have an alert and bright mind, an adult who is fighting to speak through a migraine and a head like cotton wool, an adult who has used up a huge amount of their energy just to answer the door to you, it’s a very different calculation. The risks are higher.

I have come away from several interactions now not being entirely sure what was said, if the pay was accurate or was the work really completed as requested. Because I didn’t know, I couldn’t remember, I couldn’t make clear judgement. I just had to plod along and follow the script, say “yes thank you” fumble for the money and hand it over and trust that all was well. It’s a risk.
I may not look like a vulnerable adult on the outside. There is no tell-tale ramp and hand rail on the house, I don’t have a “classic” look to my face but it doesn’t mean that I am not in a vulnerable position.

At the same time that this has been going on I have been considering the worth of buying a wheelchair or a scooter. Friends I have in a similar position health wise are opting for motorised wheelchairs. Aside from the usual stress and mental gymnastics involved in considering if I am disabled “enough” for a scooter or chair or if I am faking or being dramatic, there are concerns about vulnerability. Even though I almost always use a walking stick these days there is a definite step up in how visible disabled you are when you start using a chair or scooter. The internationally regarded symbol for disability is a person in a wheelchair. Our society still regards people in a wheelchair and disabled people as more vulnerable, regardless of their actual capability. And if you are seen as more vulnerable you are often treated as such, both good and bad (and really the good isn’t all that good).

For some reason, I am struggling most with the concept of using an electric chair. I have friends who use them and I don’t consider them to be more vulnerable or to be weaker. Yet when I try and picture myself using one I experience a sense of rising panic. The thought of me in a motorised chair just doesn’t fit. I imagine it and instantly see an increased vulnerability and an increased lack of agency that is more than I can cope with. In part it is a perceived passivity: you sit in the chair and the chair moves. In reality it is no more passive than a scooter: you are in control of the speed and movement, you are a not the passenger but are actively in control. But I can’t shake this feeling than in a chair I will be vulnerable.

What can be done about this then? Is there a solution to the issue of vulnerability. Clearly there is some need for us to assign he label of vulnerable adult to some people. There are those who need extra protection and help that can’t be denied. But we also need to consider that vulnerability is not an absolute state. It can develop in a person or can vary day by day. Vulnerability is also something that very much varies by perception. In some cases it is self perception: I would feel more vulnerable in a motorised wheelchair than in a scooter; I feel vulnerable when I am fatigued and dealing with contractors. When this is so then the individual can work on altering their own perceptions, breaking down the exact why and what of that vulnerability with the ultimate goal of feeling less vulnerable.

The issue is of course that that doesn’t change other people’s perceptions nor does it change and physical attributes. I may train myself to feel less vulnerable but I will still have that fatigue and difficulty concentrating that puts me in a vulnerable position. Additionally other people’s perceptions, whether formed of good intentions or with the intention to harm are difficult if not impossible to change. When you appear as visibly disabled, there is a likelihood that various people will automatically perceive you as vulnerable regardless of any other evidence to the contrary. This of course can inform their actions and how they treat you, in some cases increasing the risk or vulnerability in the process.

Still though, the issue of actually having traits and difficulties which render me vulnerable exist. Is the problem then simply that I am vulnerable I am correctly perceived as vulnerable by our culture and simply can not and do not want to admit to this level of vulnerability. I do not want to be a vulnerable adult. I do not want to be somebody in need of cosseting, care, talking down to and gentle explanation. And yet, I do not want to be hurt, swindled, taken advantage of or otherwise mistreated as a result of my difficulties. I do need help. I do need reassurance. I do at times need people to talk me through complex decisions, forms and calculation. I do need to sit down and rest and I do need help with mobility.

It comes down to trying to express to people that vulnerability leads to a need for help but that help does not need to come at the cost of a person’s dignity.

I hired a scooter for Nine Worlds. Using it on public transport was an experience.