Sex, the charmed circle and disability

Note: This is almost 4000 words long… just thought you should have a heads up!  I was going to split it but it didn’t feel right…

What is the charmed circle?

In 1984, Gayle Rubin argued that we should view sex as a vector of oppression – we shun what we don’t understand and human sexuality is so varied that we inevitably don’t understand all of it so we do consider some acts as lesser or as abnormal. As such, we then end up oppressing people who carry out those acts and society creates a hierarchy of sex.

“Like gender, sexuality is political. It is organized into systems of power, which reward and encourage some individuals and activities, while punishing and suppressing others.”
– Rubin

A significant consequence of a hierarchy of sex is the creation of moral panic.  Historically we have seen panic and moral outrage in response to different sexual behaviour, eg sex outside of marriage, same sex sex, prostitution and obscene material.  The theme they share is always that they are outside the privileged, or charmed, circle of behaviour.  One reason these panics create such out roar is because the behaviour and activity is seen, ultimately, as a threat to civilisation.  If ‘bad’ types of sex are allowed to become mainstream then even ‘worse’ behaviours will follow. We see this when fear of children being molested is brought up in arguments about allowing same sex marriage.

Time and place are important when looking at what is and isn’t acceptable.  Sexual behaviours have changed rapidly in the last century and this speed has created confusion about what is ‘normal’ when it comes to sex.

“Regarding sexual normalcy from a social perspective, the individual accepts societal norms for choice of sexual object and activities.  Within a given society, sexual norms may differ according to a subgroup’s religion, education, political beliefs, or socioeconomic status.”
– Leslie R Schover and Soren Buus Jensen

To try and illustrate the concept that certain sexual behaviours are considered privileged over others, Rubin developed the charmed circle.  Sexual activities which are judged by society as being good or natural are set up within a binary where the flip side is then unnatural and bad.  The inner circle is where good sex takes place and the outer therefore is where deviant sex is place.  This diagram shows how different values are used to judge the acceptability of different types of sexual behaviours and demarcates the line between normal and abnormal.

In setting up a binary of good and bad behaviour the charmed circle, by extension, creates good and bad people.  In reality of course, we are all complex layers of differing, and sometimes competing, identities and this matrix of interaction can balance out certain sexual behaviours or come together to emphasis the prejudice that is cast on a person’s sexual identity.  It is important to note that making the ‘right’ decisions about sexual behaviour can result in our belonging to, or not, a particular group, to having citizen ship of a particular society.

As a disabled person who is interested in disability and sexuality, I shall be viewing the charmed circle through a disability lens.  Having said that, I don’t feel I can truly step away from my other identities and hence this will not be an unbiased look at the charmed circle.  In addition to being disabled, I feel it is important to note here that I am also bisexual, feminist, single and cannot have penetrative sex. These are all parts of my identity and as such they will affect how I view the charmed circle.

What is sex?

As I mentioned above, I cannot have penetrative sex.  This obviously skews my concept of what is and isn’t sex, but despite this, for so long I had internalised the dominant discourse that penis in vagina sex is the only legitimate type of sex, or certainly that it is top of the hierarchy.  It works well in our culture of black and white thinking as it is a clear cut act.  We set people up as virgins or sexual and whilst we don’t value these labels as strongly as Victorian society did, we do still feel the need to have a specific, defining moment where you move from one to the other.  This is why penis in vagina sex is so useful in defining sex – it is a very precise moment when you transition from virgin to not and I think we still find ourselves with internalised ideas about what this means as part of maturing.

However, penis in vagina sex is not available to us all.  Not everyone is attracted to someone with different genitalia, not everyone has a functioning penis or vagina and even if you do, it doesn’t mean that penis in vagina sex is what you enjoy.  This also sets up a goal orientated vision of sex instead of one that focuses on pleasure throughout.  How many times do we see male orgasm portrayed in the media as the aim of sex?  What about female orgasm?  And what about non penetrative acts that are not purely for foreplay?  I have problems with that word – foreplay – because it implicitly sets up the idea of a destination and privileges the goal over the journey.  I haven’t read magazines which talk about sex for a while now because they frustrate me but they did, and I assume still do, portray foreplay as incidental.  As a detour to get to the (male) orgasm.

Margrit Shildrick discusses these ideas and how historical and religious ideas still shape our understanding and definition of sex today.

But for my purposes here, I’m going with the idea of self definition.  Sex is what the person or people engaging in it consider it to be.

How do disability and sex interact?

Note, different people experience disability very differently and will also experience being disabled and sexual in vary different ways.  This makes it very hard to discuss this area comprehensively and yet concisely, as such, please note that some ideas will not apply to some disabled people and there will be other aspects that I haven’t been able to cover.

Earlier I mentioned that sexual activity can be related to someone’s ability to be a citizen of a society and Cashelle Dunn argues that disabled women are denied full citizenship simply by virtue of being a disabled woman.

When it comes to disability, people are reduced to things, objects to be pitied, to be looked after.  There is a prevailing view that the disabled person is childlike, especially if they are perceived as being dependant, and this is a barrier to seeing disabled people as sexual.  Society wants to prevent disabled people from having sex in the same way they do children.

Two thirds (67%) of the British public feel uncomfortable talking to disabled people.

Over three quarters (76%) think of disabled people as needing to be cared for, and 13% think of disabled people as getting in the way some or most of the time

Just a third (33%) of British people said that they would feel comfortable talking to disabled people, with many worried that they will seem patronising or say the wrong thing

– 2014 report from Scope

44% of people in a Guardian poll said they had never had sex with someone with a physical disability and probably wouldn’t.

These are not sexy ways to view people.  And thus, these attitudes taint society’s view of disabled people having sex.  If 67% of people are uncomfortable talking to me, how are they going to feel about having sex with me or even thinking of me as a sexual being?

Disability, sex and the charmed circle

“I am aware that, for many, sex and disability at times seem not so much intersectional as incongruous: “What exactly do you do?” is about as frequent a question for disabled people, in relation to sex, as it historically has been for many queers. The motivation behind the question, however, has usually been different. Although stereotypes of the oversexed disabled person engaged in unspeakable acts do exist, disabled people are more commonly positioned as asexual— incapable of or uninterested in sex.”
– Robert McRuer

Whilst disability is not one of the segments in Rubin’s charmed circle, I would argue that it is implicit in many people’s view of acceptable and unacceptable sexual behaviour.  However, because the majority of the population assume disabled people to be asexual, it has possibly not crossed many minds to even include it in the circle.  I am positing that for many people, disabled people are outside the circle entirely.

“There is an unspoken taboo about relationships and disabled people.  Disabled people’s sexual and emotional needs are rarely included in any discussion or representation in everyday life.  This reinforces the public’s attitudes and expectations towards disabled people as seeing them as ‘sick and sexless’ rather than participating in full sexual and family relationships.  It is perhaps one of the most pernicious ways in which society has blanked out disabled people from a fundamental area of social life.”
– Lamb and Layzell, 1994

Echoing Rubin’s discussion, Shildrick notes that there is a “cultural imaginary that fears nonnormative sexuality as being a potential point of societal breakdown.”

 “Where disabled people are seen as sexual, this is in terms of deviant sexuality, for example, inappropriate sexual display or masturbation.  Derogatory stereotypes, concerning for example blindness, are typical of this tendency.”
– Tom Shakespeare

I, obviously, advocate for the inclusion of disability within the circle and whilst I do not believe in a hierarchy of disability or that certain types of disability are acceptable when it comes to sex, I do know that some people, consciously or unconsciously, feel this way.  What I mean by this is that, for example, people with invisible disabilities are considered to be potential sexual partners and that it is acceptable in the minds of others for that person to be engaging in sex, with the confines of the other aspects of the charmed circle.  On the other hand, a person with no bodily control is seen by the majority as not just not acceptable sexual participants, but as not even in the game.  Some of these distinctions become clearer when we consider the other binaries that are featured in Rubin’s charmed circle.

Note: just as I was posting this, I stumbled across a paper which has used the charmed circle model to illustrate a hierarchy of ability.  I haven’t read it yet but about 2/3rds the way you can find an image of this.  It doesn’t fully illustrate the point I make in the previous paragraph but it does show that the more disabilities you have, the more unacceptable you are seen as being.

Additionally, if we accept, as we should, that disabled people are sexual beings, we must then decide where they fit in terms of the charmed circle.  In Rubin’s model, it seems we would tend towards the outer limits simply because of how sex plays out given our particular disability.

Marriage

According to a variety of different reports from the last 50 odd years, disabled women are less likely to be married than non-disabled women.  Interestingly this divide is smaller when it comes to men.  From the point of view of having charmed sex, this means disabled women would have to wait longer, or forever, to have sex.  There is also evidence that in heterosexual relationships, disabled men are more likely to maintain their relationships whereas disabled women tend to find their partner leaves them.

Returning again to the 44% of people who haven’t had sex with someone with a physical disability and probably wouldn’t, we are left with just over half the population to consider relationships with, and if you are heterosexual that figure roughly halves, if you are of a sexual minority then you’re really limited, especially given some of those people will already be in relationships.  And if you manage to find that needle in a haystack, not only do you have to date them, you have to both want to marry each other as well before the sex is considered acceptable.

Couples only

For Rubin, this excludes masturbation.  As we saw with marriage, this could leave disabled women in particular unable to have any form of acceptable sexual experience.  There is also the consideration of facilitated sex:

“Where sociocultural mores and the law broadly support a normative image of sexuality as heterosexual, private, ideally reproductive, and above all autonomous, facilitated sex—which by definition cannot be wholly private or self-directed—all too clearly draws attention to the difference of anomalous bodies. If the public discussion of sex and, more particularly, sexual variation is still a strong taboo in many Western societies, then the very notion of such hands-on involvement is even more disturbing.”
– Shildrick

This also brings up some legal aspects which Shildrick expands on:

“Although consensual acts of homosexuality are no longer always a crime in many Western jurisdictions, a homosexual act remains illegal under the Sexual Offences (Amendment). Act 2000 in the United Kingdom, for example, if it takes place in a situation deemed to be not private. Given that the presence of any third person or persons is understood to break that privacy condition, then clearly gay disabled sex is, strictly speaking, illegal if it is facilitated by a personal assistant whose physical presence is required.”

Procreative

This assumes that all people are fertile, would make good parents and want children.  I want to be clear here that disabled people can be parents and can make amazing parents, that is a stigma which would be an entire discussion on its own.  But not everyone can be.  I can’t dress myself, let alone a baby and I certainly couldn’t life one or safely hold it.  I also don’t want to pass on my genetic condition.  These are choices I have made due to living with my particular disability.

I would also argue that many people assume that disabled people are not having procreative sex but I have lost the research I read about perceptions around disability and parenting…

To privilege procreative sex also turns sex into a goal orientated activity.  One which is phallocentric and by necessity requires male orgasm and penis in vagina sex.  Extending this idea of goal orientated sex, one which is prevalent in our society where the goals is penetration or (normally male) orgasm, the idea of sex as a destination is one that troubles me and seems to take away pleasure.  Penetration as goal rules out anyone who can’t penetrate or be penetrated and there are so many reasons why disabled and non disabled people could find themselves in that situation, whether as a one off or ongoing.  It also dismisses other pleasurable parts of sex and also, a lot of penis in vagina positions are physically demanding in a way that other activities might not be.

Bodies only

Sex toys and things like sex swings and positioning aids are all ways in which disabled, and non disabled, people can have a satisfying sex life and the stigma around them has lessened since Rubin’s writing in 1984.  But there is still some stigma and reluctance to discuss sex toys which impacts on those of us more reliant on them.  If you have hands which don’t function well or you can’t get an erection or need help positioning yourself then sex toys can come to your rescue.  Whilst non disabled people use sex toys, for some disabled people they can be the difference between sex and no sex but again place the disabled person in the realm of unacceptable sex, at least in the 80s.

In private

This requires that you do not live in a group home or sheltered housing or anywhere were you have limited privacy.  Deinstitutionalisation has made it more likely that a disabled person has a home space but having carers and other types of support can limit your privacy, even within your own home.  It also pulls in ideas we saw when we looked at couples only.

Disabled people often feel an additional pressure to play out all intimacy within a private sphere. I have heard time after time stories of disabled people being out in public with their partner and being assumed that they are actually a paid for carer.  Further, if the couple hold hands or kiss, the common narrative either feels pity for the non disabled partner, congratulates them for being an amazing person or pressurises the disabled partner to feel grateful that they are loved.

“Whilst law may allow women with disability to participate in sexual activity, society tolerates it only if it remains in the private sphere.”
– Dunn

Free

This is a more controversial area and not one I want to go into right now but some people who have disabilities have argued for the right to use sex workers to meet their needs.  When society is set up in such a way that disabled people are not seen as sexual it can be difficult to find someone who wants to have sex for free.

Disability Now conducted a survey in 2005 which revealed that 22 per cent of disabled male respondents (compared to an estimated 10 per cent if you look at the whole male population) reported having paid for sexual services compared to just 1 per cent of disabled women. Similarly, just 16 per cent of disabled women had considered paying for sex compared to nearly 38 per cent of disabled men.

Alternative charmed circles

If we accept the idea that some types of sex are privileged over others then the charmed circle could be considered as a model for this, although I do find the use of binaries objectionable.  One could consider instead an array of spectrums, for example marriage being highly privileged by our society, couples who live together coming next followed by long term relationships followed by short term relationships and sex with strangers featured at the other end of the spectrum.

If society is set up so that one of the binaries in the charmed circle is able bodied and disabled, then I would argue that in reality there is again a spectrum.  Someone who has an invisible disability is privileged over someone who has a visible disability.  And someone who can still partake in ‘traditional’ sex would be privileged over someone who, for example, has very limited bodily control.

NB, I am not advocating for a spectrum here, I am noting that in my experience and hearing from others, that this spectrum exists and to ignore it would be to great too large a generalisation about what it means to be disabled and sexually active.

An interesting alternative I found was from Meg-John Barker who flipped the circle so that narrower ideas about acceptable sex where on the outer circle.  This is reached by reasoning that people who have less mainstream sexual identities and behaviours often have more fluid and more diverse ideas around sex.

From an anecdotal and common sense perspective I would argue that the same is true for many people with disabilities.  The nature of having sex with a disability often means increased communication is necessary.  There are also, by virtues of different bodies, a greater number of ideas about what sex is and what sex can be and similarly the use of sex toys and accessories may play a bigger role in sexual activity.

“Some women feel liberated from social expectation as a result of impairment, some men feel doubly inferior.”
– Tom Shakespeare

Having a disability can take you outside of certain societal pressures.  If you are treated as though you are invisible and cannot be beautiful because of your disability, it makes it easier to shun society’s expectations when it comes to appearance.  Being seen through a genderless role, reduces the pressure to perform to your gender.  Of course, these ideas aren’t going to be true for every disabled person and some people may feel even greater pressure to conform to society’s expectations.  If you do defy convention then this may extend to your sex life.  Personally, not being able to have penetrative sex has created space for pleasure-centric not goal-centric sex.

Non acceptable approaches to sex and disability

Flowing through all of the above is the idea that sex and disability should be viewed as acceptable, as good and not stigmatised.  Having set that up, I do want to highlight areas where behaviours are unacceptable as I think this is one of the flaws of Rubin’s model.  She has set up a value based model around how we view sexual behaviours and yet has failed to include consent, rape and objectification which are surely crucial elements of any acceptable/non acceptable model.

Abuse

Disabled people are significantly more vulnerable to abuse, including sexual abuse.  For some people there is something inherent in their disability which makes them vulnerable – a lack of understanding about what’s happening, a physical inability to defend oneself – and having carers and other professionals in your home does create increased possibility for abuse.  In fact a 2014 study found that more than 40% of women with disabilities had been victims of violent sexual encounters.

The 1995 British Crime Survey found that disabled women were twice as likely to experience domestic violence as non-disabled women.  In 2008, Women’s Aid confirmed this was still the case and additionally:

  • “Women with learning difficulties are even more likely to be at risk and the level of violence that they experience is also likely to be higher.  The more dependent they are and the more complex their needs, the more likely it is that they will be at risk, as are women with mental health problems.”
  • “More than 70% of women with learning difficulties are sexually assaulted, a rate that is twice as high as for those in the general population.”

(quotes from Scapegoat by Katharine Quarmby)

Devotees

I’ve written before about disability devotees, that is people who are attracted to the disability or related equipment but just to touch on the subject, Tom Shakespeare sums up the issue quite well:

“Some non-disabled people are seeking disabled partners for reasons we can only be described as exploitative… Disabled people very commonly find themselves the focus of sexual interest from people who find their particular impairment titillating… the person is being treated as an object, and this implies that the relationship is unequal and potentially oppressive: they become a means to the sexual gratification of others, rather than an equal partner and someone whose own pleasure is valued.”
– Tom Shakespeare

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Wilderness as a place

This is one of those posts that I sat down, wrote and barely edited because I really wanted to get it out there so forgive me any errors or untidy phrases.

Today Robert MacFarlane posted an open question on twitter:

“like many, I have long been fascinated by the complex relations of “mental health” and “nature”. Where, for you, is the most interesting current research & writing (from any time) to be found concerning this broad area?”

I too am fascinated by the relationships between mental health and nature as well as the added dimension of physical health which interplays with both mental health and nature.  I was excited to read the numerous replies but quickly found myself disappointed.  Repeatedly Miles Richardson was held up as a example of current research and writing and he is someone I follow on twitter and have read some of his research.  But beyond this there were numerous anecdotes which highlighted the privilege with which many people view and experience nature.  There was an unspoken assumption in many of the tweets that nature meant somewhere “out there”, away from humans, somewhere that could be described as wilderness.  By creating that distance we not only put ourselves outside of nature but we make it impossible for some people to engage with nature.

Immediately my mind goes to those of us who can’t walk and thus require carefully cultivated paths which inevitably regulate our experience.  Hidden and undiscovered or rarely used places are considered to be more natural than tarmacked or wooden decking paths.  This means I cannot truly experience nature in the eyes of those people but I know that this isn’t true.  I experience nature deeply in my own way, perhaps more so because of my disability and limitations. Other reasons people may not be able to get off the beaten track include where they live, finances, transport, lack of information and so on.

Another common narrative about nature and mental health is that of getting away from technology.  Now, if I am leaving my house I have to either be pushed by a carer or go in my electric wheelchair.  And I am aware that the people replying probably mean computers and phones when they deride technology but my wheelchair is technology and I cannot engage with anything outside without it.  Technology is not antithetical to nature.  Like everything in this world it’s about how we use it.  Technology can help us to identify bird calls or trees, put names to the flowers we’re seeing and in that sense can help to more deeply engage us with the nature we are experiencing.  Taking photos with cameras and phones can help us see more closely and help us to slow down.

A third thread is that of how easy and simple it is to go out in nature and how foolish we are if we don’t.  Again, an example from my own life.  If I have found somewhere suitable to go and be in nature, somewhere accessible, with parking so we can take my wheelchair and not worry about the battery dying.  Say all of those things are sorted and say then it rains.  Just a little rain, no big deal; the words of many people who think nature is easy.  We whip out my wheelchair waterproof, wrangle it over me and the chair and in doing so I’ve got wet.  Assuming no more water leaks in, which it always does, I will still get chilled and probably ill as a result.  The same is true in winter, even on dry days – being in a wheelchair, not moving, means you feel so much colder than those around you and for many people with physical health issues, this has greater consequences.

Beyond that single thread of tweets, this idea of wilderness being true nature is prevalent in society and it gives us permission to ignore the nature that permeates our city, the nature which is literally on our doorstep, or ramp in my case.  Doing this deprives us of experiences but also alters how we think about conservation – it is something out there, not something in our everyday lives.

Privileging wilderness is also insidious because it has traditionally meant that female nature writers have not been able to engage with nature writing, or at least have not been granted the same status as their male equivalents, by virtue of not being able to access those places deemed wild.  The male monopoly on nature writing was challenged in the second half of the 1800s by writers such as Mary Roberts and Anne Pratt who “wrote with humour and insight about native weeds” (The Oxford Book of Nature Writing).

“What sees the stranger in passing by? A small and insignificant looking weed, covering the top of an old wall, or springing from interstices where the mortar has fallen out between the stones.  What sees the botanist in this simple weed?  An object of great interest; formed especially for the place which it is designed to fill.”
– Mary Roberts, 1845

This close-looking at the immediate environment juxtaposed with the drive to exotic and unusual that had driven men up till this point.  Instead of great adventures in search of rare and wonderful orchids, women had to find something to meet their interest nearer to home.  When we look at this through the lens of place, we see the male wilderness and the female domestic environments reflected in their writings.  I suggest that it’s possible these female nature writers were more in tune with nature than the male explorers.  To know a place intimately and deeply gives you a stronger sense of connection than you get from passing through.

“If there’s one thing that underlies the work of many women nature writers, however, it’s a sense of interconnectedness, a dissolving of barriers between nature and culture, wild lands and home.”
Vivian Wagner, Creative Nonfiction, Issue 61 – Learning from Nature

Wilderness also, often, suggests vast plains of uninhabited lands filled with large, strong feature – perhaps a mountain range.  By virtue of having 65 million people living on a 242,495 km² island, there is not much of the UK that could be considered wilderness in the sense that Americans or Canadians experience.   But is that the only kind of wilderness? Wagner cites Annie Dillard as being a wilderness writer but notes that her wildernesses are small, consisting of a wood behind a suburban house, a neighbourhood creek and a field by a busy road.  Dillard has rejected the idea of nature being confined to raging rivers far removed from roads and hillscapes which have never seen telephone poles and has found what many feel as the spiritual power of nature in her own back yard.

“The birds and I share a natural history.  It is a matter of rootedness, of living inside a place for son long that the mind and imagination fuse.”
– Terry Tempest Williams

William’s here illustrates the power of intimacy and longevity. You can be part of a place, part of nature, part of the wild simply by being there and paying attention for a while.

“As with the work of many other women writers, Strayed’s wilderness is not separate and distinct from herself.  Rather, the larger world and Strayed herself are interwoven and connected, one shaping the other.”
– Wagner

The interesting paradox of Cheryl Strayed’s Wild, is that the wilderness she escaped to and wrote about is now marketed as a route which you can recreate and experience through her experiences rather than a landscape with which you can create your own connections.

Despite everything I’ve just said about women finding alternatives to traditional wilderness, I am not saying that women do not write of the “true wilderness” but instead that historically, by focusing on local nature, women were able to break into the field of nature writing in a way that perhaps they couldn’t have otherwise.

“Ornithology and botany within the confines of home and neighborhood were considered to be fitting pursuits for woman, but solitary back-country living … and wilderness exploration … were most emphatically not.”
– Lorraine Anderson on Victorian society

I’d like to leave you with an image.

I am laying in bed, incredibly ill.  Every time I move I am violently sick.  But my bedroom window is open and through the net curtains I can hear a blackbird singing.  When I last made it into my kitchen, I saw a female blackbird repeatedly gathering nesting materials and flying up to a vent in a wall.  I do not know, but I like to think, that this is the male who was with her.

A wood pigeon coos the repetitive ‘coo coooo coo cu cu’ and I am reminded of the two, with their soft grey jackets and peach breasts, that perch on my fence, day after day.  Occasionally interacting, often just coexisting quietly like an old couple in companionable silence sitting on a bench in the sun.

I cannot leave my bed, I can barely sit up to look out the window, but I am nature and I am with nature.

Disability and style

I think I’ve written about this, or at least touched on it before, but when you are disabled, there is an assumption that you don’t care about your appearance.  But appearance is about far more than looks, it is a way of communicating to the world about who you are.

I am still working on getting back to my own sense of style in terms of my body.  I’ve cracked it with my flat and one of the nicest things someone has said was that my flat basically looks like my soul!  This is despite the boxes of food for my peg, despite the equipment and the wheelchairs and the bed raiser and the trolley and the… Well, you get the picture.

But my body is harder.  You can’t get around needing to wear splints, using a wheelchair, having a tube in you and needing comfort from your clothes.  What I want to do with this post is share with you some people who are doing this (seemingly) well and my own little hacks that I’ve found to help me out.

First of all, a bit about the importance of style for your mental wellbeing:

This entire post was prompted by an article on Disability Horizons so do check that out as well.

I’ve always had a very individual sense of style.  I was the teenager who didn’t care what other people were wearing.  I loved bright colours and was the only person in my sixth form to have DMs, let alone DMs with epic-ly long coloured laces and over the knee stripey socks.

I lost my sense of style at various points in my life – when I started working for example and when my depression was incredibly severe.  But the most acute and painful lose of sense of style, and sense of self, came when my disability started to interfere with how I appeared to the world.

For me this was a gradual process.  I started wearing wrist splints, then finger splints, then knee splints and ankle splints.  Then came the crutches.  Then the wheelchairs.  And alongside this I was having to wear ever more practical clothing.  My beautiful satchel was replaced by a functional rucksack.  I stopped being able to wash my hair very often.  And I stopped being able to do anything with my hair.  I’ve never worn much make up but that was no longer an option.  And then I stopped being able to wear trousers, tights and leggings because I couldn’t pull them down to go to the toilet.

It was this, the loss of my iconicly me tights, that hit the hardest.  I had a huge drawer filled with all different colours and different thicknesses.  I was known for my tights.  And I lost that.  That hurts more than not being able to wear my beautiful black boots or my much loved DMs.  Even as I sit here, I still feel these losses.  It’s like losing a part of yourself.  My DMs and my tights were so much a part of me and how I expressed myself to the world…

But.  Slowly I am working my way back to myself.  My wrist splints are hidden by arm covers which come in a fantastic array of designs and have the added advantage of stopping the velcro from sticking to everything.  These are the ones I have on today:

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To overcome the unwashed hair, I obviously turned to dry shampoo, lush being my preferred choice – it’s more expensive but lasts forever so it’s a good investment and it smells yummy and isn’t a spray which I find difficult to use and also not great for my allergies.  I also turned to hair bands and headscarves.  When my hair hasn’t been cut for a while my fringe annoys me and these have the advantage of a) covering the unwashed hair and b) keeping my hair out of my eyes.  Soft fabric hairbands are really comfy and you can get whatever colour or pattern you want online but I also like the headscarves and hairwraps that cover all your hair and I’ve got mine from ebay.

Jessica Kellgren-Fozard has some great tips for hairstyles when you have limited mobility:

So, working down, we come to clothing and here comfort is really important to me.  I’m either spending a lot of time sitting in my bed, in my riser recliner or in my wheelchair and my clothes must accommodate that.  As I can’t do trousers or leggings I wear a lot of dresses.  I love tshirt style dresses, jumper dresses and knitted skirts.  But this doesn’t mean boycotting style.  What I tend to do is stock up when they’re in fashion or when I find a dress I really like, I’ll buy it in a couple of colours.

And you can always accessorise.  I feel like I’m very unqualified to be telling people about any of this but this is my experience.

Splints… There is no getting round the fact I wear them.  As I said, I cover up my wrist splints but that still leaves fingers, knees and ankles.  I’ve not found a way of making my knee splints any more stylish but my ankles tend to be hidden because I love wearing boots.  I have to buy them a couple of sizes bigger to accommodate the splints and I can’t wear DMs any more because I can’t get my feet in them easily enough with the splints.  What I’ve found works best for me is ranges with a wide option and boots with a full zip down the side.  Unlike putting a foot in a boot, a splinted foot doesn’t have as much give so you need the shoes to do the hard work.

When it comes to my fingers, I was always covered in beautiful silver rings with stones and patterns and then the splints came along and they were replaced by pieces of NHS beige plastic.  You know the colour… And then I found silver ring splints. Mine were from a company which no longer ships to the UK but again, etsy has a wide range and there are other people who sell them.  When I’m out and about, even when I’m in hospital, people compliment me on my rings, thinking that they’re just decorative and that is such an empowering feeling.  They are complimenting me not commenting on my disability.

I am very aware that this post is getting to be pretty long but bear with me…

Next to the matter of my tights, or lack of them… Instead of tights and leggings, these days I wear very long socks.  All the joy of warmth without the difficulty of pulling them down when you go to the toilet.  I get mine from Sock Dreams in the US because they have a fantastic range and, crucially, give you detailed information about length and width at the top.  A lot of long socks assume your legs are the same width all the way up which is obviously not the case for most people!  I also have to wear compression socks from time to time and was very excited to get an email from Sock Dreams this week about their new range.  I’ve also had some great pairs from Compression Sock Shop including a pair of purple spotty ones!  There is no need for compression socks to be boring, let your style shine through them!

I am not always the tidiest of eaters, especially as I can’t always use cutlery… This of course means sticky fingers and I am starting a small collection of lovely, reusable napkins.  I think they are underrated – most of us grab a piece of kitchen roll if we need to – but resuable ones are obviously better for the environment and plus, I’m allergic to paper… Again, I turned to ebay as well as etsy and there are so many great designs out there these days.

Hmm… What else did I want to say…  I don’t remember!  And to be fair, I think this is probably long enough…

In addition to the links through out, check out:

Another post about things which make my life easier!

I’ve done a lot of these posts but I am also continually finding new things which make my life with chronic pain and fatigue easier.  And my condition changes so I need to find new ways of coping.  All the info in the past posts is still really relevant and if you’re new to chronic illness or my blog, I would recommend looking back at them.

If like me, you’re stuck inside, I hope my connecting with nature posts give you some inspiration:

A good mattress.  I’ve written before about the value of a mattress topper and they do make a lot of difference.  But I’ve just bought a new bed and mattress and the difference is amazing!  Although now I stop and think about it, my mattress topper was probably over 5 years old… Everyone has different mattress needs but I have gone with a mammoth mattress and bed (there was a deal if you got both).  Because it’s a medical mattress, I got VAT off.  When I was trying out mattresses, I lay on them like everyone else but I also made sure to do lots of wiggling as that’s how I sleep. For me, memory foam was awful – I couldn’t turn over and it was a nightmare to get me off them as I sort of got sucked in…!  Of all the memory foam ones, the ones which were half sprung, half memory foam were the best.  But the mammoth was the one which was best for me.  If you’re mattress shopping and have a bed raiser or profiling bed, make sure to ask for advice.  Some of the mattresses we looked at would not have worked well if they’d had to bend.

Electric hot water bottle.  All of the hot water bottle benefits without having to use scolding hot water.  Mine are (I have two!) from noozie and take about ten mins to heat up and stay warm for a few hours after, longer if they’re in bed with you.

Metal straws. I use a lot of straws for meds and my drinks and when I go out.  Metal straws are cheaper and more environmentally friendly than the plastic sort.  Depending on where you buy them, you can get a pouch to pop one in your bag and keep it clean.  Most seem to come with a cleaner.  NB, don’t use metal straws for hot drinks, you could burn yourself.  Plastic straws designed for hot drinks are the way forward there.

Toiletry bottles.  You know the ones I mean?  They come free in washbags and you use them to take shampoo away with you.  Well, if you’re on a lot of liquid meds, they can be an easier and lighter alternative to taking all your glass bottles with you.

Salt sachets. My lovely friend picks these up every time we go for coffee now so I have a good stash!  I use them to add salt to drinks when I’m feeling potsy and have some in my bag, my wheelchair and on my trolley.

Earphone headband. I hate sleeping with earphones in but I have awful neighbours who can be so loud I can’t hear my audiobook at night.  Enter sleepphones.  They are a headband which has flat speakers inside.  You can feel them but they are so much better than earphones.  They come with a cord or a bluetooth connection.  Whilst I was concerned about strangling myself in my sleep, I tried the corded version as they’re cheaper and I’ve been fine!  The cable is a good length and their customer service is great. I had a little issue with mine and they responded and acted on my email within 12 hours, no questions asked, no fuss.

Beanbag laptray. You can get some really cool ones these days including ones you can add your own photos to.  They are great for eating off but also for using in bed.  I have my laptop on one at the moment.  I also use them for doing little craft things on so that I can lift and move the whole project easily without dropping stuff everywhere.  You can get crafters trays as well if that’s specifically what you’re wanting.

I’m very certain there were more things I wanted to include on this list but that is the nature of brain fog… If I remember I might add them to the comments!

FOMO and chronic illness

It’s not a phrase I use, so in case you’re not familar with it, FOMO is the fear of missing out.

Meg, from That Hummingbird Life, sent out an email recently about FOMO:

Whether it’s feeling like we should have done things in the past, getting caught up in thinking we need to do/buy something because we’ll regret it if we don’t, or feeling like the odd one out, it’s fair to say we’ve all experienced it.

It’s something I’ve had to deal with, although I’m not sure I’ve been especially conscious of the process, because of my pain. There are obviously many things I can’t do and I have to be more choosy about what I do do. Which almost makes it easier because there are physical consequences to trying to do everything and I know I physically can’t do everything I want to do. One, probably less helpful, way I have dealt with it is by mentally blocking out things which aren’t an option. Most of the time I don’t think about me going on holiday, even when talking about other people’s holidays, because it’s probably not going to happen.

More helpfully, I sort of approach FOMO in terms of compersion or shepping naches. The first is a term used mostly in terms of poly relationships and the second is a Yiddish phrase. Both essentially mean getting pleasure from seeing someone else get pleasure. For compersion, this might be feeling all full of love when you see your partner is in love with their other partner. For the Yiddish, it seems to be used mostly for the pride or gratification that a parent/teacher/grandparent gets when they see their child enjoying themselves or achieving something.

This can be tricky, but for me it basically means that I don’t get jealous when someone is doing something awesome (well, I do sometimes…). I see it as something that is making them really happy and I am happy when my loved ones are happy. We are a very individualistic society and are socialised to think “I want that” when we see someone with something, even if we don’t actually want it. I think part of FOMO is tied into that. When someone is telling you about something brilliant they’ve done or are doing, a part of us leaps to I want that or I should want that or I should do that. By doing this, we miss the awesomeness of just basking in the glow of someone who feels great.

Maybe my thought process might help explain..

Person A: I have just been on a great holiday…
Person B: Oh, I’m so jealous, I really want/need a holiday (this may be said, thought or internalised somehow)
Person C: Oh that’s great but shit, I should be going on holiday/wanting to go on holiday/all my friends love travelling what’s wrong with me…
Person D: Brilliant, tell me more about it, I’d love to hear the details and see some pics (might have a moment of longing or holiday lust but goes back to listening to person A and living the experience through them. I want to say living vicariously but that, to me, has negative connotations.)

Person B and C are probably going to experience a bit of FOMO and think they should be going on holiday and possibly to the same part of the world because A had a great time and they want to join in.

Person D is getting the magic of A retelling the adventure and seeing A smile and engaging with A. Person D is experiencing something different to the holiday itself but it’s still it’s own magic. Person D, for whatever reason, hasn’t got bogged down in what they don’t have or aren’t doing. They are focusing on what they do have which is a great friend who’s wanting to share, rather than what they don’t or can’t have, namely a holiday.

Person D is probably more like a parent filled with delight when their child comes home from school full of excitment about their spelling test going well and having a great time playing with their friends and having been invited to someone’s house for tea for the first time.

We are so socialised into needing everything for ourselves that when we hear about something we can’t be part of, we sulk and we kick off. Not because we want the thing, but because we are conditioned to want everything, especially if someone else has it and we don’t.

I think, for me, the other important aspect of how I approach FOMO is prioritising! I have limited energy and know that if I do something on monday, I need to rest on Tuesday etc. I have no choice. If I ignore this and book something in monday and tuesday, tuesday’s thing will probably end up a write off. So I have to figure out what I want to do most, and this is helpful in living authentically anyway. So I’m faced with x and y, which initially I want to go to both of. But then I stop and think and maybe x is more interesting or y is similar to something I’ve done recently or actually, I didn’t want to do y but I felt I should. X is the winner! And I will enjoy x a lot more than if I tried to do x and y because I would break myself doing both and would spend all of x worrying about how I would get through y. Essentially, I do fewer things but with more heart. The same goes for friends, I go for quality over quanitity both in terms of the actual people and the way I spend time with them.

And if there’s something that you do really want to do, do it. Or find a way to bring it into your life. Or do bits of it. Like if we’re talking about a party, go for the first hour, really throw yourself into it and then head home. Basically, slow down and think about what you actually want. And be grateful for the things that you do experience. And change your viewpoint. Instead of thinking a half day trip is stupid and not anywhere near as good as a two week holiday, make it a big deal if it’s a big deal for you. Take photos, treat yourself to something as a reminder, make a collage afterwards etc. Treat it with the same respect as a holiday.

I used to spend entire days by the sea, long day trips that I loved. As my pain got worse, I couldn’t cope with it anymore and got grumpy with myself when I had to leave after a few hours. I ended up ruining half day trips with dreams and longings for full day trips. Over time I realised I was shooting myself in the foot and started to let go of what I used to be able to do and focus instead on making sure my shorter trips were great in themselves. I had to stop comparing them to my full days and instead begin treating them as something in their own right. I no longer try and do everything I want to but instead I focus on what I want to do most and enjoy it for itself.

There is no way round it, when you have a chronic illness, you are going to miss out on things. But by focusing on missing out, you miss out on what you can enjoy.

#30dayswild

I wrote an introduction to #30dayswild at the beginning of June which explains the challenge and how I’m approaching it.  As we’ve reached the end I want to share some of my highlights.

Day one: I saw a huge bee exploring my bird feeder which was exciting because no birds have been by… It’s been up for a few months now and I think it’s just a bad location but I don’t have a better one for it. I had the window open so despite being stuck in bed, I was able to hear the birds. I also emailed various organisations about disability and nature (I’ve been meaning to for a while) to ask for their suggestions, recommendations and to see if they could share my blog posts.  And I wrote up some long overdue reviews on euans guide:

And my copy of BBC wildlife magazine arrived!

Day two: Using the magic of the internet, I identified a blackbird from its song that wafted through the open window.  As I said above, I don’t really know any bird calls and I’d love to learn more.

Day three: My 30 days wild pack arrived and I wrote about snails and ladybirds.  I scattered wild flower seeds in my yard and made butterflies from clay as its butterfly education and awareness day.  This was a good day but I was in a state health wise at the end of it.

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Day four: Day three was a bit much for me so day four has been a bit of a washout.  Basically mostly spending it in bed watching netflix and reading about the seasons:

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Day five: I felt worse than day four so very little done at all and not really even up to reading.  I did however get a great response from one of the emails I sent on day 1 about access to nature when you have limited mobility.

I feel like this entire year is just passing me by as I bounce from one phase of illness to another…

Reads: As I lay ill, inside, trapped by my body, the seasons turn and turn and turn
Reads: As I lay ill, inside, trapped by my body, the seasons turn and turn and turn

Day six: There was supposed to be a walk but there was also exceptionally heavy rain so we postponed.  I did get out to go to the not very wild supermarket where I bought a couple of nature focused magazines.  I also, amongst other things, saw a happy little snail on the pavement outside my flat.  Whilst not a plant, it put me in mind of the following quote:

Reads: I like it when a flower or a little tuft of grass grows through a crack in the concrete. It's so fuckin' heroic - George Carlin
Reads: I like it when a flower or a little tuft of grass grows through a crack in the concrete. It’s so fuckin’ heroic – George Carlin

Day seven: Resting up for a day out on 9th.  The sun is dancing with the clouds, alternating my bedroom between light and dark in a matter of seconds.

Day eight: Awake at 3.30am but being serenaded by a blackbird calling in the day.

Day nine: A day trip!  We went to The Deep in Hull which was very accessible and has very detailed information about access on their website.  I was impressed.  As we drove over the weather was a bit patchy, sun and clouds.  And then the heavens opened.  It was like giants were pouring buckets of water over us.  The window wipers couldn’t keep up, the drains couldn’t keep up, we could barely see the car in front.  And then, just as suddenly as it started, it stopped.  It turned out to be a very strange day for weather.  When we stopped for lunch at Hornsea, it was really cold.  Once we’d eaten though, it was glorious sunshine and lovely and warm.  But after a short walk, the sky turned black once more. The weather was certainly wild!

I realise that #30dayswild is more about plants and animals and such but the weather is an important part of nature for me.  One day I will learn more about it. But for now, how about some pictures from The Deep?!  It was hard to capture them because you can’t use your flash and it’s quite dark and the animals move around a lot!

From here on out though, things got a bit patchy. My health went squiffier than normal and I’m not committing to any more thing a day challenges because they always seem to coincide with me feeling rubbish…

Day 10: Woken by a woodpigeon in the early hours and the day finished with a musky, golden sky.

Day 12: A little walk.

Day 18: Went to the park.  Saw ducklings and also baby blackbirds which I’ve never seen before!

Day 19: A really hot looking pigeon glared at me from my garden fence.

Day 20: I did some drawing, including a picture of dandelions:

dandelion

Day 21: More art, the summer solstice and a post about sunflowers.

Day 22: Saw a starling in a car park with a huge beakful of food, looking very pleased with itself.  And crows or ravens ruling the roost on the top of the butchers.

Day 28: Two little blackbirds hopped around outside my bedroom window making me smile.

Day 30: The woodpigeon, in all his plump and puffed up glory, returned to tightrope walking along my fence.

As I said above, I’ve not done well because of health and even though these all seem like little things, they bring a smile to my face when I notice them.  Having learnt the sound of a blackbird calling at the beginning of the month, I now pay more attention to his song.  It is more meaningful to me because I know which bird is calling.

Me and my period

Note: this post is going to be explicit and possibly more detail than you want.  You have been warned.

I’m reading a lot of spiritual feminist stuff at the moment and the idea of menstruation not being a shameful thing is coming up repeatedly.

Society has issues with any kind of bodily output but as something that only women* experience, periods are considered especially icky. It’s a “curse”, it’s something that we talk about in euphemisms, it’s a taboo.

When was the last time you heard someone refer to blood when talking about periods (another way of avoiding saying menstruation).  You might hear pms, bloating, that time of the month.  You might hear reference to it as a way of explaining why a woman isn’t happy with something or is standing up for something.  As a way of undermining women.  But you are very unlikely to hear about blood.

The idea of menstruation is one that is associated with unnatural things, despite it being so incredibly natural.  It is considered disgusting despite it being the very reason that you are alive today – without it, your mother couldn’t have carried you.

There is so much I want to say about periods and the different ways that they are experienced in different parts of the world.  There are some girls out there who can’t go to school because they can’t access sanitary products.  There are some people out there who are forced or coerced to take birth control so that their periods stop.  There are people out there who really struggle with their periods and are brushed off when they try to seek help for their pain or their moods.

But this post is entitled me and my periods.  So, back to me.

I have never liked my periods.

I remember wanting my period because I thought my mother would treat me differently.  I thought, because it would connect the two of us and not my sister, she would love me.  Obviously this was not the case.  But I clung to it.  And getting your period was grown up and like most young people I was in a rush to become an adult.

But once I got my period (on a canal boat… eugh!), everything changed and nothing changed.  My relationship with my mother was exactly the same.  But now I had to contend with potentially unpredictable bleeding. A mother who blamed any acting out or standing up for myself as hormones.  Everything was blamed on my hormones.  And I was expected to use tampons, because my mother did.  But what no one tells you is that inserting a tampon isn’t supposed to make you cry in pain.  That it shouldn’t be like forcing your hand through a brick wall.  See my post about vaginismus for more metaphors and similes on the matter of inserting anything into my vagina.

And when you are 13, you are already so scared that you aren’t right and I had no sense of self esteem and then to top it off my vagina seemed to be broken and I had no words to explain this.

Fast forward a few years and I am now experiencing horrific pain with my period.  It also comes with an unpredictable and quite inconvenient dose of diarrhoea.  To the point I missed a number of lectures.  And didn’t feel I could tell anyone why.  Sharing two toilets with nine other people didn’t make this any easier…

I went on the pill.  Yay, my periods should be manageable, whoop!  No.  Yes I knew when I was going to bleed each month but on the odd occasion I tried to skip my bleed, I would instead end up with a month long period.  On the plus side, there was regularity and it was lighter.  Although actually, I’ve always been pretty regular with my periods.  My body loves them.

A few years later and I lost a lot of weight because of anorexia.  Periods stopping are a sign or symptom of anorexia – at the time I was thinking at least some good would come from this.  But no.  My body loves its periods.  Despite being incredibly underweight, I still had them.  I only missed 3.

A few more years and my body still loves to have its periods.  I am not going to have children, I can’t have children and my periods are heavy and messy and humiliating.  Any shred of dignity is lost when my carers have to shower me when I’m bleeding.  They have to wash blood out of underwear, out of pjs and out of my bedding.  At times they have to change my sanitary towels.

Even when I am physically up to changing my sanitary towels, I still have other issues.  I love that some people find their period empowering and a way to connect to their body.  For me, it is about lack of control, lack of dignity and the mess that comes with it.  Other than blood stains, you also have to contend with the actual bleeding.  Guys, I bet you’ve not thought about this – there are times in my cycle where the blood is continuous.

I’m trying to decide how explicit to get here. F*ck it.  

So when you are trying to wipe yourself clean after using the toilet, you have not only got to deal with the diarrhoea, you also have to keep wiping the blood until you think you might get your knickers and hence sanitary towel up round your waist in time to not get blood all over the place.  This involves a lot of wiping.  And my hands struggle at the best of times**.

There is the matter of dry, crusty blood that arises because I still only get one shower a week regardless of whether I am bleeding or not.  There is the matter of being allergic to the sticky side of sanitary towels.  There is the cramping and all the other stuff that comes with a period for most women.

So I do not like my period.

I wish I did.  I wish I could enjoy it or at least not hate it.  But at least I am hating it as a conscious choice.  We are socialised to not like our periods – they are messy and they are reminders to the patriarchy that however powerful men get, they will not be able to create life.  We are socialised to be quiet and hide ourselves away when we are bleeding.  We are socialised to pretend there’s no blood involved.

So feel free to love or hate your period, or feel indifferent if that’s how you feel.  But examine your reasons. Is it because you do get awful pain or is it because that is how you’ve been told you should feel?


*not all people who menstruate are women, not all women menstruate but i’m using the word woman here anyway for ease of language and am speaking in generalities.

**I have a toilet topper which does have a wash and blow function but I find it useless for periods, advice is welcomed from others in similar circumstances!