Coronavirus and Disabled People (UK)

I have been wanting to write about coronavirus and disability for some time now but every time I tried to think about it, I got too angry and frustrated. Hopefully I am now emotionally ready, we will see!

Obviously coronavirus is horrible for everyone. It is deadly and even if you haven’t had it, your life has been significantly changed because of it. There are loved ones you haven’t seen, holidays you haven’t taken, celebrations that haven’t happened. But for many disabled people, coronavirus comes with a skip full of additional worries.

If you have been paying attention to the news, you may well get the impression that there are no disabled people under 65 and that everyone with underlying health conditions are over 65. Younger disabled people are being forgotten. There are articles about grandparents desperate to see their grandchildren for a hug, but where are the reports about shielding twenty-somethings desperate to see anyone at all because they’ve been alone for months.

As the government shielding list is excruciatingly tight, many people, myself included, have decided to shield because we know our health risks and are vulnerabilities. Just because they don’t fit nicely into a governement tick box, does not mean I am going to endanger by life. There are also many people who cannot leave the house for other reasons, or can’t leave without care which may not be available now. This means that unlike most of the population, a lot of disabled people aren’t going out for exercise and fresh air.

Further, not everyone has internet. A survey by Glasgow Disability Alliance showed that only 37% of people said they had broadband at home. This means that they are not socialising online, they are not taking part in family zoom calls and they are not joining in with games on the house party app.

The mental health impact of not leaving your home, of not seeing other people and of not socialising in alternative ways such as online is significant. If you add in the additional concerns that people with disabilities have around the pandemic, you have a very serious threat to health and wellbeing. Twice as many disabled adults as non disabled adults felt that coronavirus related concerns were making their mental health worse. That is significant.

A higher proportion of disabled people than non-disabled people were worried about the effect of the coronavirus pandemic on their well-being (62.4% for disabled people compared with 49.6% of non-disabled people); their access to groceries, medication and essentials (44.9% compared with 21.9%); their access to health care and treatment for non-coronavirus-related issues (40.6% compared with 21.2%); and their health (20.2% compared with 7.3%) in May 2020.
The Office of National Statistics

My own experience with groceries, medication and health care has thankfully had issues that we have been able to reconcile eventually. I don’t eat much orally so grocery issues were limited to concerns about toilet paper. With medication, my carers have a good relationship with the pharmacy and this has helped significantly. Having carers has been critical here and I have been incredibly lucky that my care provision has not been impacted.

I also needed my feeding tube replacing which was complicated. It needed doing urgently but was not yet at emergency stage – it was an emerging emergency! But various people within the NHS system interpreted it as routine, which it would have been if routine operations were being done. In the end there were a lot of phone calls until I finally managed to get someone with a bit of power and a bit of common sense. What should have been a standard appointment ended up with me and my carer sat in a room in the hospital for the entire afternoon but the tube got changed in the end. In between all the calls, I was anxious and worried – if my tube completely broke, and it was getting close to that, then I would have been rushed into hospital as an emergency for an unplanned procedure.

I wanted to touch on my experience, even though it’s not been too bad, to give some humanity to the statistics. These are real people, real concerns and real lives that are being affected.

I mentioned that my care has been stable throughout this and I know I am very lucky in that regard but 43% of people in an RIDC survey said that they were no longer recieving visits from personal assistants. Many other disabled people are relying on friends and family instead of their usual care and this may be why 33% of disabled adults are feeling like they are a burden on others (compared to 11% of non disabled adults, ONS).

Those people who directly employ their carers have had to face many obstacles including what to do if the carers get sick and how to source precious PPE. Guidance was slow to appear and confusing at best. It has also left many disabled people who have carers or personal assistants, having to source and pay for their own PPE.

Side note, many disabled people live in poverty and many people in poverty are disabled.

Further, the Covid 19 Act made changes to what local councils have to do for disabled people. On the face of it, the aim was to free up resources to allow local authorities to prioritise care, however many disabled people are concerned about the potential loopholes it provides. Local authorities are already very stretched and as such it is incredibly difficult to get the care you need to thrive, rather than just survive. I worry that these loopholes will be used to minimise care provision and then, going forward, that people will be told they were ok on reduced care and therefore don’t need what they have been assessed for.

There is so much here that I cannot cover. This is already a rather long post and I have not touched on the specific impacts on visually impaired and hearing impaired people, or people who are neurodivergent or people with learning disabilities… You get the idea!

Just to give you a flavour of the issues and concerns at play…

And if that wasn’t enough, in the past, many disabled have been told that their reasonable adaptations for work, such as being able to work from home, are not workable. Coronavirus has revealed that we had the technology to make it possible, but not the will. This has been a bit of a kick in the teeth…

Similarly, lockdown meant suddenly everyone realised they could have events online. I have ‘attended’ so many talks and courses and conferences that would have been inaccessible to me if they hadn’t moved online. If I am out and about I use my energy up so much faster than when I’m at home and so I’ve been able to do so much more. I am really hoping that blended talks and courses are the way forward allowing people to participate in person and online.

Further Reading:
RIDC – Latest research into the impact of coronavirus on disabled and older people
Inclusion London – The impact of covid 19 and the government response on disabled people
Inclusion London – Access to Work issues arising from covid 19
Inclusion London – Coronavirus and the social impacts on disabled people
Coronavirus and the social impacts on disabled people in Great Britain: May 2020
Disabled News Service: Disabled people have been excluded and marginalised
Scope: We won’t be forgotten

Edited to add: Inclusion London’s report Abandoned, Forgotten and Ignored

One from the archives… feminism

There’s a lot of posts on my blog now – I’ve been writing it for over seven years – and so I wanted to highlight a few old posts. I’m going to do this every so often I think.

Today we are dipping into feminism…

Assumpions people make when you’re in a wheelchair

That you can’t speak.

That you can’t make your own decisions.

That you must be child-like, innocent, naive and unable to take on responsibility.

That they shouldn’t look at you because that would be offensive.  To the point that people end up walking into the wheelchair.

That you have never ever heard anyone quip “have you got a license for that?” or “have you passed your test?”.  We’ve heard it.  Over and over and over.  It’s not funny.  Do you have a license to use your legs? Exactly.

That you can’t be working.  Yes some wheelchair users can’t work but also some non-wheelchair users can’t work either…

That because you can’t possibly be working, you can’t be in a hurry to get anywhere so it doesn’t matter when they’ve blocked your car in because they’re “just going to be a second”.

That you must need full time care.  And yes, some wheelchair users do but not all.

That you can’t move your legs or stand.  Again, some wheelchair users can’t stand, but some of us can.  Getting a sense that there is no generalisations here?  Good.

That you get all these perks given to you such as a wheelchair or a wheelchair vehicle.  Not in the slightest bit true.  There is a system rigged against you getting anything.  Many wheelchair users have had to buy their own chair.

That having a wheelchair is a dreadful thing.  Not true.  Having a wheelchair means you can go places and do things.  Instead of being a prison, wheelchairs are freedom.

That you must be interested in sports and taking part in the paralympics.

That you must be a lovely, kind and generous person.  Some people who use wheelchairs are horrible people.  Just as some people who don’t use them are.

That you are not a sexual being.

That any relationship you have must be based on pity.

That you are brave for continuing to live.

That you are inspirational for leaving the house.

 

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

Nonsexual virgin vs the hypersexualised fiend; stereotypes of disability and sexuality

This should probably have been the first in my blog posts about disability and sexuality…  Essentially, there are two ideas of the disabled person and sexuality; the nonsexual* virgin and the hypersexual, unstoppable fiend.

Where do these ideas come from?

When it comes to physical disability, people are reduced to things, objects to be pitied, to be looked after.  There is a view that the disabled person is childlike 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.

Then there’s the issue of reproduction – even when a disability has been acquired, somehow it’s assumed that the child would also have a disability and regardless, that having a disabled parent would mean that child suffers.  There is this idea that a person with a disability cannot, or should not, have children and the obvious conclusion is then that that person cannot or should not have sex.

And who would actually want to have sex with someone with a disability…? As disability is still viewed on many levels as a deformity, an abnormality, people with disabilities are considered undesirable.  So no one would be interested in a person with a disability so general thinking doesn’t even have to consider the idea of a sexual disabled person.  And tied up in this is the concept that disabled people can’t have sex; this will feed into and be fed by the idea of the nonsexual disabled person.

Historically people with disabilities have had to live in institutions which often strongly discourage intimacy between residents, again reinforcing this idea that disabled people don’t have sex.

At the other end of the spectrum, the hypersexual stereotypes are more commonly linked with learning disabilities, bipolar disorder and other mental health issues.  This seems to be because of a perception of lack of control which leads to indulgent, hedonistic behaviour which the person may not fully understand or be fully lucid for.

“Because people with mental disabilities are often not taught or shown the difference between social and private behaviour (or are unable to learn this difference), activities such as masturbation, displaying of one’s genitals, and inappropriate sexual advances may be carried out in public, or in the company of others. For the most part this does not have to do with a lack of intelligence, but a lack of informative education and teaching methods that allow people living with mental disabilities to live within a larger society.” – http://infochangeindia.org/disabilities/disabled-sexualities/asexuality-and-hypersexuality.html

What damage do these stereotypes do?

The nonsexual image means that often people with disabilities aren’t see as prospective partners.  Depending on the disability, research has shown that disabled people are less likely to have a long-term partner or marry than non-disabled people. Then we have the sickening results of a 2014 newspaper poll (I think it was the Guardian) which asked people if they had ever had sex with someone who had a physical disability, 44 percent said “No, and I don’t think I would.”  Given that estimates suggest 20% of the world’s population has a disability, this is ruling out a lot of potential partners! Although if you were one of the 44%, then I probably don’t want to have sex with you either…

At the other end of the spectrum we have the assumption that people with disabilities are out of control when it comes to sex, this tends to be an assumption used when the person has a learning disability or mental health issue as opposed to the nonsexual person with a physical disability.  Concerns around unplanned pregnancies have led to a history of forced sterilisations under the guise of protecting the person with the disability.  This comes from both the angle of protecting the person as well as protecting the potential child who could have a disability and from the belief that a person with a disability can’t be a good parent.  There’s a great podcast about this issue over on Stuff Mom Never Told You.  Whilst it’s mostly focused on the historical aspect of racially motivated sterilisation it’s still a relevant and interesting piece.  As is their Sex and Disability podcast.  edited to add: The Australian magazine Marie Claire also looks at the forced sterilisation of girls and women with disabilities (pdf).

As well as forced sterilisation, we also have the issue of inappropriate sex education.  I’ve heard of disabled young people who missed out on any sex education because it wasn’t deemed necessary… And if you are lucky enough to receive sex ed, then it’ll probably be aimed at ‘normal’ people and you still won’t be empowered through information.  And it’s not just that you don’t know how to “do it” safely; if you don’t get a comprehensive education, you can find yourself at risk of abuse or struggle to do anything about abuse – without empowering information, how do you work out appropriate boundaries, how do you tell someone that your friend put his finger in your vagina if you don’t have a word for vagina… This is turning into a post about the importance of sex ed so I’ll leave this point (almost) there.  The important message is we should all get appropriate sex ed. Thankfully we live in the world of the internet (if you’re reading this you do anyway, I acknowledge that there’s still a lot of the world without it) and sites such as Chronic Sex and Sexuality and Disability are out there to help (although they still require a certain level of literacy and understanding so will exclude some people…).

And then there’s the impact the nonsexual physically disabled person myth has on health care.  I recently tried to get a coil fitted, failed miserably, and then asked if I could try another kind of contraceptive pill.  On both occasions, the two different doctors I was dealing with, both assumed I didn’t need it as a contraception.  I don’t but that’s not the point.  The point is I could have needed it as a contraception but because they assumed not, I didn’t get asked the same questions or given the same advice such as if you’re sick it might not work.  Or any information about using condoms to prevent STIs.  Thankfully I’m fairly clued up on sexual health but a lot of people aren’t, I return again to the issue of poor sex ed…

*I’m using the phrase nonsexual or desexualised because asexuality is great, when it’s your identity, not when it’s forced on you by society and I think using the same terminology will confuse the issues and take away from someone’s actual identity.