Opioid addiction and chronic pain: How to tell when someone is addicted

Because of the legitimate pain and need for pain relief, identifying when a chronic pain patient is addicted is a very difficult area.  It is common for someone taking opioids to become physically dependant and tolerant of them over time but this isn’t the same as an addiction.  For addiction to be present, you’d expect behavioural changes in addition to the dependence.

The behavioural changes in a person addicted to necessary prescription medication tend to be harder to spot than those in a person addicted to unprescribed substances.  As they have a legitimate need, it’s easier to cover up or explain away possible signs of addiction and some of the sings of addiction are also explained by the chronic pain itself.  However, a cluster of signs can indicate the need for concern and to explore the possibility of someone being addicted.  These signs include:

  • Frequent contact with doctors, whether that’s visits or phone calls
  • Having appointments about a different issue and asking for a prescription at the end of the appointment
  • Doctor shopping – contacting or visiting different doctors so there is less continuity and the person can play the doctors off each other a bit to try and get more opiates.
  • Manipulating care providers
  • Frequently complaining about medical conditions which justify the need for the drug use and which also justify the need for increasing dosages.
  • Complaining about new medical conditions and pain.
  • Reporting certain drug allergies and lack of therapeutic effect of alternative drugs which mean that the opioid is the only option for pain relief.
  • Frequent reports of losing medication and prescriptions.
  • Declining work or school performance
  • Relationship dysfunction
  • Decreased interest in other pain relieving options such as regular physiotherapy and other ‘health’ work needed to improve quality of life
  • Defensiveness when talking about prescriptions.
  • Increased irritability and anxiousness especially about the availability of the drug, when the next dose is etc
  • Overwhelming concern about the amount of medication etc
  • Mood swings, irritability, anxiety etc
  • Concern from friends, family and other observers
  • Insisting on managing own medication, especially in hospital settings
  • Increasing side effects and lack on concern about them
  • Signs of withdrawal

The physical side effects of opiates can also be a warning sign, especially if they seem to be getting worse.  When it comes to opiates, there is a sedative effect which can be seen in confusion, poor judgement, poor memory, drowsiness and unsteadiness.

If the person is open to a discussion, it can be much easier to get an idea about addiction however the caginess that comes with addiction can make this very difficult.  Unless a person is very open with you, these are probably questions best asked by medical professional, or dropped into conversation more as thinking points.  Avoid making it seem like an attack as anyone attacked about any part of themselves is likely to just get defensive.

  • Quantity: Does the person take more medication than needed? Are they taking more than they used to? Are they taking it more frequently?
  • Attitude: Do they want to cut down or stop taking the medication? Are they using the meds despite knowing they are having dangerous effects on their body?
  • Time: Do they spend a lot of time thinking about the drugs and when the next dose can be taken? Do they spend a lot of time getting and using the drug?
  • Social effects: Are they able to manage their responsibilities? Is drug use affecting any of their relationships?  Are they socialising as much as they used to?  Are they withdrawing from activities?  Has their circle of friends changed?
  • Do they get cravings and urges to use the drug?

Again, I want to reiterate that this is a grey area and it’s hard to identify when legitimate use for chronic pain turns into and problem.  It happens slowly and insidiously.

If you or someone you know is addicted to any kind of drug, please seek help and advice.  If you or someone you know is in immediate danger, ring the emergency services.

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Opioid addiction and chronic pain: Long term effects

There are a number of common side effects of opiate use including feelings of euphoria, feeling spaced out and ‘high’, and drowsiness.  According to the RCOA, between 50% and 80% of patients in clinical trials experience at least one side effect from opioid therapy.

“Evidence shows that chronic opioid therapy is associated with constipation, sleep-disordered breathing, fractures, hypothalamic-pituitary-adrenal dysregulation, and overdose… Opioid-related adverse effects can cause significant declines in health-related quality of life and increased health care costs.”
A Review of Potential Adverse Effects of Long-Term Opioid Therapy: A Practitioner’s Guide

To understand the effects of long term use, you need to know that opiates work by depressing everything, including the pain, but also natural bodily functions such as breathing, blood pressure, heart rate and alertness.

Breathing

In terms of breathing, there are a number of ways that opiates affect this vital function.  They slow down your breathing, they are associated with central sleep apnea, atiaxic breathing hypoxemia and carbon dioxide retention.

Let’s bring in some definitions to help explain what these terms actually mean for the patient:

  • Central Sleep Apnea: pauses in breathing while asleep during which the body does not attempt to breathe. A certain number of pauses in sleep are normal but with CSA, the pauses are longer and more frequent and are the result of the brain not sending the right signals to the muscles related to breathing.
  • Ataxic Breathing: an irregular, uncoordinated breathing pattern.
  • Hypoxemia: Low blood oxygen which can cause low oxygen levels in your tissues.
  • Carbon Dioxide Retention: abnormally high levels of carbon dioxide in the blood.

Essentially, breathing is no longer an automatic reflex.  All of these can lead to additional health issues, for example if you aren’t getting enough oxygen there is a risk of brain damage as well as damage to other vital organs.  Deprived of oxygen over a period of time can result in organs shutting down and for some patients, their breathing is so depressed that they fail to wake when they don’t breathe.  It is this, and organ failure, that is behind many opioid overdoses and deaths.

For patients on around the clock opiates for at least six months, sleep disordered breathing issues were found to be as high as 75%, as opposed to 3-20% in the general population.  These effects appear to be related to the dose strength, with ataxic breathing observed in 92% of people taking a morphine equivalent dose of 200mg, 61% of people taking under 200mg and 5% of people not taking opioids.

We will see the effects on the brains performance when we consider the mental effects of long term use.

Gastrointestinal

Just as the breathing system is slowed down, so too is the gastrointestinal system.  The urge to pass stools reduces causing constipation and even impacted bowels.  Opiate use can also cause vomiting, cramping and bloating.

Hormones

One of the things that shocked me when I was looking into the effects of opiates was the impact on the hormonal system.

When you think hormones you tend to think sex so I’m going to start there.  Opiate use can decrease your sex drive, can cause infertility, can cause erectile dysfunction and can cause issues with menstruation.  Fatigue and hot flashes, inappropriate milk production can also occur.

Hormones are also involved in other bodily functions and can affect bone density causing osteoporosis and impaired healing.  Growth hormones, thyroid stimulating hormones and many others are also affected.

Mental

As an organ, your brain is affected and thus your mental wellbeing and functions are impaired.  Opiate use can cause confusion, lack of concentration, drowsiness, depressed alertness, depression and other mental illness.

As the person’s judgement is affected, they can make decisions that they wouldn’t otherwise.  There are impulse control issues as well as impaired insight and issues with reasoning.  Demotivation and apathy can lead to social withdrawal and the persons world can become smaller and smaller.  Moodswings, hostility, increased secrecy and a change in personality can all come about because of opioid use.

Due to the reduced oxygen levels, the brain struggles to perform even basic tasks (such as breathing) and the person can experience agitation and disorientation. Impaired memory is another common effect.

Muscular skeletal

The combination of the confusion and the bone density issues, muscular skeletal issues are common.  Impaired coordination can lead to an increased fall risk, as can dizziness and a sedative effect.  When falls occur, fractures are more likely.

Hyperalgesia

Possibly one of the most counterintuitive effects of long term opioid use is hyperalgesia, that is a heightened sensitivity to pain.  This feels like the most insidious of the effects as it likely leads to more opiate use and makes the whole situation worse…

Pain associated with hyperalgesia tends to be more diffuse than the pre-existing pain and less defined.

Other

Other effects include a reduced immune system responsive, slurred and slow speech, falling asleep mid conversation and not realising it, blackouts and forgetfulness.  Increased sensitivity to sights, sounds and emotions may also be present.  Dry mouth that can cause tooth decay is yet another possible effect as is a suppressed cough reflex.

Whilst one person is unlikely to experience all of these effects, in general the risk increases as the dose increases. Please do not let this put you off taking pain medication that you need, but monitor your use and your mental state and discuss any concerns you have with your doctor.

If you or someone you know is addicted to any kind of drug, please seek help and advice.  If you or someone you know is in immediate danger, ring the emergency services.

Part one: Opioid addiction and chronic pain: Statistics

Opioid addiction and chronic pain: Statistics

There has been a lot in the news about opioid addiction over the last few years, especially in America and primarily about people who have had a legitimate prescription and need for painkillers.  The standard storyline is that someone has an acute injury, has been prescribed opioid painkillers, gets addicted and then takes them without a pain need.  Whilst this common tale is an important one, it can be hard for those of us who have a legitimate need for long term opiates because of chronic pain.  We can find ourselves having to justify our need for pain relief, having that need doubted and minimised, and in some cases have much needed medication stopped.

My position in this debate is a very complicated one.  I use opiates daily.  I can only function because of the pain relief they give me.  I can only write this because of the pain relief.  Even with constant pain relief, I still experience high levels of pain and very reduced function and ability to participate in normal daily tasks.  I strongly defend my use of opioids.  I don’t think I should have to justify my use of them repeatedly and I don’t think I should be treated in a degrading manner when I ask for them.

However.  And this is a big however.

Someone close to me, who has a legitimate need for pain relief, is almost certainly addicted.  And I’m having to watch this person essentially kill themselves.

What happens when someone who needs opioids on a long term basis, for a chronic pain condition, becomes addicted?  It is probably because it is so complicated that this isn’t a story we hear as often.  This story has many parts and I’m hoping to cover them in a few different posts, partly to educate myself about the effects of this addiction and to try and unpick how it happens and what can be done about it.  For confidentiality and privacy, this isn’t going to be the story of the person close to me.

Statistics and definitions

Before we can talk about addiction, we need to try and find a definition for addiction, which turns out to be harder than expected.  It seems that opioid addiction, especially in chronic pain patients, is something that science has yet to agree on a definition for.

What we do know is that physical dependence is not the same as addiction.  Physical dependence is a physiologic adaptation to the continuous presence of certain drugs in the body.  Physical dependence is an expected consequence of prolonged use.  Tolerance to opioids is another expected consequence of long term use and is not a sign of addiction.

Addiction is characterised by behaviours including being unable to control drug use, compulsive use, cravings and using the drug despite knowing it’s harming you.  It cannot be identified on the basis of one event, instead it is necessary to observe a number of behaviours across a period of time.  Where physical dependence and tolerance are expected, predictable responses that occur with persistent use of opioids, addiction is not.

When it comes to defining addiction in the context of patients with chronic pain who are taking opioids, R K Portenoy has suggested the following definition of addiction:

‘‘Addiction is a psychological and behavioural syndrome characterised by evidence of psychological dependence, and evidence of compulsive drug use, and/or evidence of other aberrant drug related behaviours’’

The American Society of Addiction Medicine defines addiction as “a primary, chronic disease of brain reward, motivation, memory and related circuitry.”  The psychological aspect and the compulsive nature are important in helping to figure out the grey area between appropriate use and addiction.  With the latter, there is an intense desire for the drug, loss of control over drug use and compulsive drug use, and continued use despite significant side effects.  As opioids impact the brain and can lead to a temporary feeling of intense pleasure, addiction can develop quickly.

It proved very difficult to identify statistics around addiction amongst people who have chronic pain in the UK so instead I took a look at statistics around opiates and drugs in England and Wales:

  • Around 1 in 12 (8.5%) adults aged 16 to 59 in England and Wales had taken an illicit drug in the year 2016/17
  • In 1993, there were 471 deaths from opioids but by 2017 there were 1985 deaths.
  • 279,793 individuals were in contact with drug and alcohol services in 2016/17, with a majority of them having used opiates.
  • In 2017, there were over 24 million prescriptions of opioids – an increase of 10 million since 2007.
  • Fatalities from the synthetic opioid fentanyl were up by almost 30 per cent in 2017 from the previous year.
  • In 1996, there was one death which mentioned tramadol use but by 2011 there were 154 deaths.

A 2014/15 survey for England and Wales looked at the effects of using prescription opioids which were not prescribed to the user.  Whilst this is something slightly different to my focus, it can show some of the impact of addiction.

  • Overall, 5.4 % of adults aged 16 to 59 years had misused a prescription-only painkiller not prescribed to them
  • People with a long-standing illness or disability were more likely to have misused prescription-only painkillers and to have used an illicit drug in the last year.
    • Among those with a long-standing illness, 8.5 per cent had misused prescription-only painkillers in the last year (compared with 4.8% without an illness) and 11.9 per cent had taken an illicit drug in the last year (compared with 8.1% without an illness).

Basically, in summary, opioid addiction is not rare, it can affect people who have a legitimate pain relief need and it can destroy lives.

In future posts I’m going to take a look at the effects of long term opiate use and abuse, how to tell if you or someone you know is addicted, how the risk of addiction could be managed and how someone who is addicted can be helped.

If you or someone you know is addicted to any kind of drug, please seek help and advice.  If you or someone you know is in immediate danger, ring the emergency services.

Guilty until proven disabled

Guilty until proven disabled

Perpetual fear

Neverending stress

Constant foreboding

And continual dread.

Fight and battle

Battle and fight

Repeat, repeat, repeat…

Misunderstanding.

Invalidating.

Minimising.

Erasing.

YOU. ARE. ABSOLUTELY. FINE.

Disrespected. Intimidated.

Manipulated. Humiliated.

Scrutinised. Patronised.

Head crashing

From the brick wall

You’re bashing against.

Prepare to feel guilty.

Prepare to feel paranoid.

Judged a fraud?

You’re a liar, undeserving.

Judged disabled?

You’re worthless, a burden.

And the trial doesn’t cease

If you pass the tests.

The walls have eyes

And the public are spies.

Perpetual fear

Never-ending stress.

Fight and battle.

Battle and fight.

Repeat

Repeat

Repeat…



Today I spoke at a seminar for International Day of Persons with a Disability.  The event was centred around the benefits system and the experiences of disabled people.  When I was asked to be involved, I started pulling together my thoughts about the benefits system and resulting blog post began to turn into the poem above.

A few snippets from the notes I made when listening to other people at the seminar:

The process and system exacerbates conditions.  It is ineffective.  Inappropriate.  And a waste of time and money.  It does not get disabled people into work and may even move them further away from the world of work.  It is unethical and inefficient.

Failures in the system are plunging people into debt, leaving them unable to buy food, making people reliant on friends and family and charities just so they can survive.

“It just smashes your self-worth.  You’ve got to lend money, you’ve got to beg to borrow… you don’t know when you’re going to get money to pay it back”
– Disabled woman, quoted in an ESRC report

Disabled people are under siege from the very system that should be supporting us.

The DWP are stealing dreams and hopes and futures.

My thoughts on disability benefits…

I’d like to start by saying I am incredibly grateful that I live in a country which does offer welfare benefits for those of us who are ill, disabled, of retirement age and so on.

However.

You must fight a system based on fear, on penalties and on paranoia.

You must face a system where the starting point seems to be that you are guilty of fraud until you prove otherwise.

You must battle a system which seems to be designed to reduce claimants as much as possible.

You must meet a rigid timetable set by the benefits system but don’t expect them to do the same.

You must repeat yourself over and over again to different people, on different forms and don’t you dare forget to say something because that could make or break your claim.

You must provide full and detailed information, you must alert them to any changes and yet, in return, you do not get a transparent system.

You must deal with staff whose sole purpose seems to be to misunderstand you, to invalidate you, you minimise or erase your health issues and to treat you like a liar.

Don’t be foolish enough to have co-existing illnesses or disabilities.  Don’t be foolish enough to have a complex multisystemic disorder that affects you in multiple ways.  Don’t be foolish enough to have a fluctuating or unpredictable condition.  They will intentionally fail to understand.

Expect to be treated disrespectfully.  Expect to be taken to task on every little thing you do.  Expect your words to be manipulated.  Expect to argue about pedantics.

Prepare for paranoia.  Prepare to be scrutinised.  Prepare to feel judged and worthless.  Prepare for your mental health to suffer, even if you had no mental ill health previously.  Prepare to feel like you’re banging your head against a brick wall.  Prepare for a system which is devoid of common sense and compassion.  Prepare for your assessment to state that you are absolutely fine.  Prepare for an appeal to declare otherwise.  Prepare for the stress that this long, drawn out process involves.  Prepare to feel guilty on good days.  Prepare to feel paranoid if leave your home.

Do not expect to be treated humanely.  Do not expect to be treated as a human.

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

Reading

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.