Feminism and disability

Intersectionality is a big trend in feminism at the moment.  It is a sociological concept which recognises that people can experience multi-faceted oppression.  For example a black, bisexual woman experiences oppression differently to a white, straight woman.  There are different levels of privilege in the world.  You can have two women who both experience gender oppression but one may feel that more intensely or differently because of their race, sexuality, class, disability etc.

The earliest academic work that I’m aware of around feminism and disability was about community care in the 1980s.  The main argument was that women (non-disabled) were getting a raw deal out of the community care acts.  The move from institutionalisation to living in the community was a major change and feminism didn’t seem on board.  In a nutshell, their concern was that non-disabled women were shouldering the burden of this.  The care they were required to give to disabled and elderly relatives meant that they couldn’t work.  They were demanding economical equality.  Which sounds fair enough.

However, this research and campaigning focused purely on care givers and at no stage included the disabled people themselves.  Arguments were made that perhaps disabled people should be returned to institutions and/or that disabled people’s benefits should go straight to care givers because disabled people weren’t responsible or able to handle this.  The movement towards carers rights (which I’m all for, when done right) relied heavily on the image of the dependent, burdensome disabled person.  In advocating for the rights of women and carers, the feminist movement further oppressed disabled people.

It also failed to acknowledge the complexities, many women who are disabled and receive ‘care’ (in whatever form), are also ‘caring’ for family members.  Think of a disabled mother – she is both carer and caree and therefore is completely disregarded by the model that feminists were using.

They also failed to look at the wider picture.  The narrative of disability and feminism focussed heavily on care, ignoring many issues which are more uniting than divisive such as improved public transport on the dark evenings, pressures to conform to a certain model of femininity etc.

“Repeatedly, feminist issues that are intricately entangled with disability – such as reproductive technology, the place of bodily differences, the particularities of oppression, the ethics of care, the construction of the subject – are discussed without any reference to disability.”

Rosemarie Garland Thomson

It’s not just issues of research and policy and ideology.  There are other issues which arise when discussing feminism and disability.  All the practical barriers which prevent disabled people from having the same daily experiences as non-disabled people still exist.

If I want to attend a feminist meeting I have to ensure that the venue is accessible (for me this means wheelchair access, for someone else it might mean a quiet venue due to hearing issues), if it’s in the evening I would have to attend in my pjs because of when my carers come.  There are barriers to information – if you can’t read well or if you can’t read heavy academic books, you are at a disadvantage.  If you can’t cope in crowds, you probably won’t be able to attend a march… and so on and so on.

And feminists, as people who live in our society, often have their own prejudices and assumptions about disabled people which are evident in use of ableist language and ignoring disabled people, their voices and their needs.

There has been progress and there are some great examples of inclusive feminism however I worry that there is also a hang up about calling out lack of intersectionality rather than addressing the issue of inclusively.  Not being an intersectional feminist is often used as an insult from one feminist to another.  And it’s great that we are noticing when feminism isn’t being inclusive but name calling doesn’t progress the movement.  And some people are so hung up on calling out none inclusive feminism that they fail to do anything about making the movement more inclusive.

Attitudes towards disabled people

I live in a bubble.  Most of the people I talk to live in a bubble.  We surround ourselves with people with similar views, values, thoughts.

But we need to get out of our bubble from time to time or we miss some of the major problems in our society.

I’m willing to bet that almost everyone I know considers themselves to be accepting of disabled people.  I am willing to bet that almost everyone I know considers disabled people to be of value.

However…

“A poll in June 2010 by the leading social care organisation Turning Point of over 1,000 members of the public found that nearly a quarter of those polled believed that disabled people should live in institutions, and nearly one in ten that they should be cared for out of town, in a secure hospital. One-third of those surveyed believed that disabled people could not live independently or undertake employment.”

(as quoted in Scapegoat by Katharine Quamby, I couldn’t find the original report)

Another survey, four years later found that:

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

Over a third (36%) of people tend to think of disabled people as not as productive as everyone else.

Over four fifths (85%) of the British public believe that disabled people face prejudice.

A quarter (24%) of disabled people have experienced attitudes or behaviours where

other people expected less of them because of their disability.

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

Two thirds of people wouldn’t feel comfortable talking to me.  One in ten people want to lock me in a secure facility outside of town.

WTF?!?!

And these are real people.  People who exist outside my bubble.

But sit them down at a table with me (preferably a table which hides the wheelchair and splints) and I really struggle to see how they’d then think I should be hidden away in the countryside.

13% of people think I get in the way… I have to say, I think they get in my way more than the other way around…

Again, as quoted in Scapegoat:

A recent poll from the charity Scope found that nearly 40% of people who are not disabled and do not have a disabled family member do not know any disabled people [that they are aware of…].

Only one in ten British people has ever invited a disabled person to their house for a social occasion, and only one in five has had a disabled work colleague.

(italics mine)

From my own experience I’m regularly treated as stupid, unable to communicate and childlike.

I have had carers who have obviously felt superior to me simply because they have better use and control of their limbs.  One of them talked to me using baby talk… (and nearly got a kick in the face when she tried to put on my “sockie wockies”…)

In shops, I am regularly ignored whilst strangers talk to my friend or carer.  The assumption being my wheelchair makes me unable to communicate effectively.

Strangers speak to me loudly and clearly, if they speak to me at all.  And they assume that I am public property.  They have a right to ask personal questions about my disability.  They have a right to move my wheelchair without telling me or asking me.

I had one guy try and help take off my coat.  I didn’t even know he was behind me.  He didn’t say anything just grabbed my sleeve…

I am routinely ignored and stared at in equal amounts.  I am pitied and praised, by strangers, simply for living.

Where do these attitudes come from?

For a more comprehensive answer, try a book like Scapegoat.  But for a quick run through of possibilities…

It’s not long ago that disabled people were locked away. Out of sight out of mind.  So society hasn’t had long to get to grips with, and understand, visibly disabled people.  The move away from institutions was around the 1970s and 80s.

There is research that disability hate crime is linked with poverty and deprivation.  Pressure on resources (which is especially high in poorer areas) leads to a pressure to find a scapegoat and disabled people often find themselves at the bottom of the pecking order.

A mix of government pressure on people to work and stigmatisation of people who do not work as well as propaganda which perpetrates the myth of the benefits scrounger.  Again, disabled people are at the bottom of the hierarchy of benefits claimants.

Attitudes may arise from, and crimes may be committed out of, ignorance, prejudice, power and fear of disability.  Becoming disabled can happen to anyone and thus disabled people make none disabled people face their own mortality simply by existing.  We’re powerful beings!

There is a weird jealousy of the ‘privileges’ of being disabled – disability benefits, blue badges, adaptations and people assume that disabled people are getting given things left,right and centre which is so far from the truth.

Images portrayed of disabled people tend to be unfavourable – whether it’s a film which uses disability as a shortcut for saying bitter and evil (think captain hook), or charities displaying us as pitiful and needy in order to raise money.  Even when they are more positive, such as the paralympians, they are not always helpful depictions – we can’t all be paralympians!


If you happen to be one of the 67% of people who feel uncomfortable talking to disabled people, please reflect on why.  And think about what you would say.  Asking about the disability is really not necessary.  Try the weather or a grumble about the length of the queue. 

Disability and poverty

The links between disability and poverty are complex but they are very connected.

Disability causes poverty and poverty causes disability.

Disability is one of the key indicators for living in poverty.  In 2013, it was estimated that 40% of disabled children and a third of disabled adults lived in poverty in the UK.

This is a pretty bleak post but I think it’s important that people start thinking about the details. 

Living in poverty is awful in many many ways but government policies and people’s attitudes towards poverty are disabling people as you read this.  And more than that, they are making disabled people more vulnerable to futher disability. 

Unless we look at the different factors, risks and influences, we will not be able to stop this cycle.

Disability causes poverty

This side of the circle seems more obvious or more intuitative I think.

Being disabled is expensive

Life costs £550 more on average a month if you happen to be disabled (Scope).

Worklessness

You may not be able to work which leaves you dependent on benefits or possibly a pension for your income.  In my case, I get a pension and some Personal Independence Payment.  But because my pension is above my allowable cost of living, anything over £12,000 goes straight on my care.  Thus meaning that despite paying into my pension, I still find myself below the minimum income standard (for a non disabled person).

In 2016, single people need to earn at least £17,100 a year before tax to achieve the MIS, and couples with two children at least £18,900 each. – Joseph Rowntree Foundation

Work hours

If you can work, your disability may affect the hours and types of work you’re able to do and thus restrict your income.

The same is true if you have a disabled child – there are appointments to go to etc and if you’re on a zero hours contract then you have few rights.  Also if you have a disabled child, you may (you shouldn’t, but you may), find childcare costs are higher or you just can’t find someone to look after your child (again, you shouldn’t but…).  You may end up unable to work because of your child’s needs.

Relationship stress

Having a child with a disability can place stress on the parents relationship and relationship breakdown can be a factor in causing poverty.

Reduced educational opportunities

Time out of education, due to ill health or appointments etc, can impact on a disabled child’s educational attainment which can then affect earning potential as an adult.  As can other barriers to education.  Perhaps your local school doesn’t have wheelchair access so you are forced to go to a different, lower quality but level access school.  Or your school has poor support for dyslexia etc.  All of this will effect your performance and hence your job opportunities and earning potential.

Infrastrucutre

The infrastructure also plays a part in work and living costs.

Inaccessible work places mean that disabled people don’t have the same opportunities as none disabled people.  Yes, employers are expected to make reasonable adjustments but there isn’t very much an office on the third floor of a very old, tiny building are going to be able to do to get my wheelchair to the office.  There’s also transport issues – if you can’t drive, you’re probably reliant on public transport to get you to work which again limits which jobs you can consider.  You may be unable to move home because of limited accessible housing so you have to look for jobs on your doorstep.

Ever tried getting across London in rush hour?  Now add in a wheelchair… Firstly that would be painful and it’d take longer and there’s the stress of the crowds.  If you want to use the tube, depending on which stops you needed, you’d have to get assistance to get on and off…  And then there’s all the tube stops which are still not accessible…

If you need to get to a medical appointment but the bus or train isn’t accessible or isn’t reliably accessible (think only half the buses having access), then you can find yourself forking out for a taxi just for the peace of mind.

I’m attending a free art class for people with mental health issues and whilst it’s only the other side of town, when it starts to get cold and icy I know I will have to pay the £10+ in taxis to attend.  I can’t get the bus because the bus route means I’d basically have to virtually get to the venue before getting on a bus.  And I can’t wait around in the cold hoping for a bus to arrive on time and with the wheelchair space free.  The cost in terms of my health make that a no go.

Attitudes

Stigma and prejudice also affect disabled people’s affluence.  If you go for an interview and the interviewer assumes you’re incompetent because of your disabiliy, you’re unlikely to get the job.  If you have a job and a prejudice manager, you’re probably more at risk of getting fired (even if it’s an unrelated reason).  If walking down the street means you get spat at, you’re probably not going to be especially keen on walking to work every day…

Poverty causing disability

“There is a strong link between povety and Special Educational Needs (SEND). Children from low income families are more likely than their peers to be born with inherited SEND, are more likely to develop some form of SEND in childhood and less likely to move out of SEND categories whilst at school” – Joseph Rowntree Foundation

If you’re living in poverty, you may find yourself at risk of disability for a number of reasons.

Environmental

For example, a damp home, an unsafe step etc increase your risk of breathing difficulties or a bad back.  There’s also the stress which a poor living environment can cause.  You may find that your area has higher pollution rates or higher crime rates, both of which have potential to cause disability.

Learning  and development

If a parent is working all the hours they can then they have less time to support their child’s development and learning and possibly less time to notice any developmental delay and hence are less likely to seek advice or support.  Or be able to seek advice and support if they want to because such professionals work 9-5 when a parent is also likely to be working…

Financial

Money is obviously a big part of this discussion.  Lack of money brings with it stress, inability to provide everything your child needs, buying cheaper and less nutritious food etc…
You may also end up working multiple jobs which is going to put it’s own pressure on your body and increase your risk of pain, RSI etc.
If you can’t afford to go off sick then your bad back gets worse and worse.  If you can’t get time off work to see a dr, your illness gets worse and becomes something more disabling.
Depending on where in the world you live, you may not be able to afford to seek healthcare at all.

Healthcare

Reduced access to preventative healthcare and reduced access to medication etc increase risk of preventable illness or exacerbate the effects of illness.
If you are unable to access healthcare (whether it’s the cost of healthcare, the cost of getting to your healthcare provider or not being able to take time off work), you are increasing your risk of disability.  If you can’t get your child immunised because of the logistics of doing so, you may inadvertently expose them to risks.
Being born into poverty increases your chance of being born early and being born underweight, both of which are risk factors for disability.

Stress

The stress of living in poverty inevitably impacts on mental health and poverty related stress can result in family breakdown which can be a cause of disability or SEND.
Children who grow up in low-income households have poorer mental and physical health, on average, than those who grow up in better-off families.

Intergenerational factors

A parent with a disability has a greater chance of living in poverty which means their child has a greater chance of having a non hereditary disability than their peers.  And so the cycle continues…

I’ve had a brief look at the UK here but the picture is often bleaker in other countries such as America and developing countries.

Disability and paying for sex

Firstly – is sex a right?

Are we all entitled to have sex? I firmly believe we should all have the option of having a good sex life. We should all be able to choose to have sex in the context of a mutually beneficial situation where no one involved is forced, coerced or has no real alternative.

Which brings me onto sex workers. Which is a huge topic with so many different perspectives. Including people who freely chose to work in the sex industry. There are however many people who are forced, coerced or have no real choice. Women can get trapped in the sex industry and this has to be an important part of any conversation around the right to have sex. However they’ve entered, or whatever the reason they stay in sex work, we need to ensure that our desire for sex doesn’t further exploit sex workers. Whether it’s through trafficking, sex slavery, being wilfully mislead or whether it’s because they need the money, they’ve got addictions which need feeding or even situations as complicated as a history of abuse which makes them feel like they have no other option, sex workers deserve the same respect as anyone else.

“[sex] is every bit as important as the right to practice one’s chosen religion or to not be discriminated against. It should be included on this list because, like religion, nobody should be forced to participate, but similarly, nobody should be denied access either.” the conversation

Sex workers and sex surrogates

Within the context of disabled people paying for sex, the phrase sex surrogates comes up a lot. What does this mean?

Sex workers – a sex worker is anyone who works in the sex industry eg porn actors, prostitutes, lap dancers, phone sex workers, sex surrogates etc. The predominant definition requires the worker to be involved in “sexually explicit behaviour”.

Sex therapists – licensed mental health professionals, think counsellor. A sex therapist will not have sex with or engage in any sexual activity with the client.

Sex surrogates – a surrogate does engage in sexual activity with the client. They aren’t (or don’t have to be) medical professionals but they do engage in work which addresses particular sexual difficulties such as erectile dysfunction, anxiety, lack of confidence… Think of this more like a way of being able to practise sex or masturbation which the support of someone. There is an International Professional Surrogates Association which offers training for surrogates.

Should disabled people be able to pay for sex?

Firstly, who would be allowed? Would you have to show that you receive disability related benefits? Prove that you’re disabled? How do invisible disabilities factor into this? Would it just be for people who’ve proven they can’t find a partner? How would people with mental illness show that they were eligible? What would happen to people who faked disability in order to be legally allowed to use a prostitute?

Ok, so that was a bit of playing the devil’s advocate but this is a hugely complicated issue. If you decide that yes, disabled people can pay for sex, you then have a whole load of logistics and specifics to sort out. Especially if you’re also in a society where non-disabled people aren’t allowed to pay for sex.

Rewinding a bit, let’s look at the arguments for and against disabled people paying for sex.

Arguments for

Rachel Watton, from the Australian organisation Touching Base, believes for people with disabilities, being able to pay for sex is a right. She acknowledges that society should change but feels that in the meantime sex should be available.

44% of people in a Guardian poll said they had never had sex with someone with a physical disability and probably wouldn’t. Those odds don’t work well for a disabled person looking for a shag…

Rachel stars in a documentary, Scarlet Road, about her life and Touching Base and providing sex to disabled people.  The film doesn’t address the issues that some sex workers face in terms of exploitation, indeed, the white sex workers featured appear to dismiss and invalidate the experiences of exploited workers.  I was pleased to see that disabled people were included in the documentary but the language used about them wasn’t always so positive.  The word “they” to refer to all disabled people was used a lot, as was “deserving” which to me can conjure up ideas of pity and can feel demeaning.  Why do I deserve sex more than the next person?  Does my disability make me that special?

However, Scarlet Road wasn’t all bad.  They talked about developing training for sex workers who were working with disabled people.  This included things like manual handling, ways of communicating etc.  This has potential to lead to resources and a bank of knowledge for disabled people and their partners.

Within this discussion, the most important voices are those of disabled people and the sex workers. 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.  This figure increases if you ask about paying to see specially trained sex workers.

Would legalising sex work for disabled clients make the industry safer for the sex workers? The pros and cons of legalisation are far too big a discussion to go into in this blog but it is an important part of the conversation so I’d highly suggest going away and doing some reading about it.

What about the therapeutic benefits of sex?  Orgasms can help reduce pain, being touched in a none functional way can have mental health benefits and sex can be relaxing.

Would allowing disabled people to pay for sex normalise the idea of disabled people as sexual beings?  Or would it make it easier to see us as “freaks”..?

Examples of where this already happens

Mark O’Brien, a disabled writer, wrote: “I wanted to be loved … held, caressed, and valued. But my self-hatred and fear were too intense. I doubted I deserved to be loved … Most of the disabled people I knew… were sexually active, including disabled people as deformed as I. But nothing ever happened.” O’Brien went on to see a sex surrogate and lost his virginity with her, she speaks in a TEDx talk.

In Holland and Denmark, support needed around sexuality and sex is something which social workers discuss with their disabled clients and have funded visits to sex workers or sex assistants.

Side note: a sexual assistant is a Dutch model which seems to offer a none penetrative sexual service, instead more focussed on erotic massage, teaching etc. Some sites suggest no kissing, no oral sex and no penetration. Perhaps a sex surrogate lite?

The horrifically named, White Hands offer a masturbation service to disabled men in Japan (I’m hoping something got lost in translation of the name because there are some troubling connotations with it’s English version).  The video I watched spoke of clients who didn’t understand their sexual urges and desires and who got confused or ended up hurting themselves because they didn’t know what to do with their feelings.  The service appears to help clients understand how to react to sexual urges as well as providing masturbation for physically disabled men.  From my perspective, it felt rather clinical… Slightly reminiscent of the Victorian woman going to her doctor to have her hysteria treated by orgasm.

And against…

Returning to Rachel Watton’s stance on the issue – society should change but until it does sex should be purchasable – an argument could be made that providing the service could hinder or prevent society from changing. It puts a plaster over the issue and means that it’s less visible. Disabled people have a means of having sex so society no longer needs to address discrimination, perceptions of disabled people etc…

Legalising paying for sex for disabled people is a way of ignoring the issue of disability and sexuality, society doesn’t need to change because we can get sex at a brothel (assuming it’s accessible of course!)… It’s an attempt to pacify us.  It also assumes that disabled people are only looking for the physical side of sex and that we don’t want or don’t deserve an intimate relationship.  It feels like allowing sex work for disabled people ticks the box of the functional desire for sex and allows society to ignore the need for intimacy which would require a lot more change and participation of society to achieve.

Allowing disabled people to pay for sex focuses heavily on the individual disabled people who may want to use this service and adapting things for them rather than on changing society.  This approach feels much more in line with the medical model approach of disability, something is at fault with this person let’s fix them, rather than addressing how disability is perceived and how we are disabled by society.  If disabled people were seen as accepted members of the community, would we even be having this discussion?

In an Atlantic article, Alex Ghenis and Mik Scarlet echo this tokenistic gesture and the troubling implications on how we’re seen by others.

Alex Ghenis, an American disability advocate and former dating and relationships columnist says of paying for sex: “It commodifies sex in terms of an action. It makes it so society can check this box that men are getting laid, so we don’t have to have broader social change—we are giving them sex through a brothel, so we don’t have to change our social attitudes around socially excluded people with disabilities…And it pities and coddles us, as if we are being given things that will assuage us … rather than have society change around us.”

Mik Scarlet, a disabled TV presenter and musician: “Imagine this, I’m disabled, growing up in Luton, and it’s now legal for me to go to a brothel—to have sex for money—because apparently that’s the only way I’m going to lose my virginity. Instantly, my relationship with sex is distorted, and it means that everyone I meet afterwards is going to say, ‘He’s disabled, that means he’s paid for sex; I don’t want to go to bed with someone who’s paid for it.’ You’ve reinforced the fact that you can’t give it away because you’ve paid for it. We are reinforcing the idea that some people are too hideous and too disabled to have sex like the rest of us, and so they have to pay for it.”

Paying for sex risks making us more “other”.  It could demean our (none paid for) sexual experiences – the idea that if you’re disabled, you’ve probably had to pay for sex and if you’ve paid for sex, the experience is therefore lesser. Paying for sex could further marginalise people with disability. It reinforces the idea we are too ugly, too broken, too disabled to have sex and not pay.  It also makes us ‘special’, a subset of society who are “allowed” to buy sex.  It feels like a strange extension of the charity model of care…

Paying for sex is also expensive, especially if your disability means you can’t work or you live in poverty.  This could result in more division within the disabled community – a tier where more privileged disabled people can afford to pay for sex and less privileged can’t.  Some people would argue that benefits shouldn’t be spent on sex but I don’t feel you can police what people do with their money.  NB. some countries do pay for disabled people to access sex services rather than the disabled person paying themselves.

There is also potential for sex workers who specialise in sex with disabled people, to be seen as a higher class of sex worker.  An elevated role.  Or by allowing sex workers for disabled people, the argument for sex work more generally could be justified.

When it comes to consent, there is the issues of the sex worker, are they freely consenting to the work they’re doing as well as issues of consent for the disabled person. If you happen to have seen Who’s Driving Doug, you may recall a scene where Doug (a disabled man) has been bought a prostitute by his driver. He seems reluctant to make use of this “present” but ends up going ahead with encouragement from the driver, his friend and the worker (who possibly wouldn’t get paid otherwise?). Whilst I think it was a consensual act, it highlighted the pressures that can lead to coerced consent. Feeling that peer pressure means you can’t refuse. Spending the money and then changing your mind but again, feeling you can’t call a stop to things. The pressure society puts on people to lose their virginity… Situations where someone is nonverbal and someone else decides that of course this person would want to use a sex worker because it’s “normal” to have sex… What about situations involving dementia or other memory issues? And what if someone appears to be consenting but actually doesn’t have the mental capacity to do so?  And communication issues?

All about the (straight) men?

Perhaps unsurprisingly, most of the information around this topic I could find is focused on disabled men… From what I could find, there are far more female sex surrogates which suggests that it’s easier for straight men to find someone.  Something I read but can’t find also suggested that disabled women felt more at risk of abuse from male sex workers than disabled men with female sex workers.

And in conclusion…

I’m not actually going to conclude anything.  It’s a complicated, multi-faceted topic and there’s too much I still don’t know and I still have too many questions.  I hope that this post has raised some of the arguments for and concerns with the idea of sex workers for disabled people.  I’d love to hear your thoughts and further arguments for and against.

Forced sterilisation of disabled people

There are a number of reasons for sterilisation including not wanting (more) children, issues with menstruation and society not wanting you to reproduce.

As such, this post will have inevitable crossovers with the post on disability and menstruation, particularly as methods of stopping periods lead to (possibly temporary) inability to have children and sterilisation can lead to stopping periods.  Additionally the argument that a person can’t cope with periods can be used as a way of arguing for sterilisation.

The History of Sterilisation

The history of sterilisation is one intertwined with race, class, disability and Nazism.  So it’s probably not surprising that people don’t talk about it much.  I’d also like to add that I’m focusing on disability here.

I feel that the history of sterilisation is an important part of the discussion.  You may not be aware for example, that forced sterilisation of disabled people predates Hitler.

The existence of disabled people was increasingly seen in the UK and USA as a threat to social progress.  Darwin himself wrote in his 1871 treatise, The Descent of Man, “We civilised men…. do our utmost to check the process of elimination; we build asylums for the imbecile, the maimed and the sick.. .Thus the weak members of society propagate their kind.”

New Statesman

In the 1880s, Francis Galton was wondering if it would be possible to get rid of the “undesirables”.  He went on to argue that reproduction by “feeble minded” people should be stopped.  Thus providing an excellent springboard for the idea of forced sterilisation.  Unfortunately this wasn’t limited to the view of one man sitting in a room pondering, it was to become a popular idea with a range of people across the political spectrum.  We’re not just talking far right Nazis here.  Left wing politicians were also believers in this approach.

In 1907, The Eugenics Education Society, it’s aims were to “bring all matters pertaining to human parenthood under the domination of eugenic ideals” and to “effect improvement of the race through knowledge of the laws of heredity.”  In 1931 they drafted a bill for the compulsory sterilisation of “mental defectives”.  Although the bill failed, it was resubmitted and helped raise awareness for their cause.  Another bill for forced sterilisation of certain kinds of “mental patients” was proposed in 1931.  Labour MP Archibald Church proposed the bill, claiming it was necessary to stop the reproduction of those “who are in every way a burden to their parents, a misery to themselves and in my opinion a menace to the social life of the community”.  Again, this wasn’t passed but coerced sterilisations occurred instead.  Because it never become law in the UK, it is impossible to know how many forced and coerced sterilisations have taken place here.

In 1934, The Eugenics Education Society would recommend legislation to ensure the ‘voluntary’ sterilisation of ‘mentally defective women’.  A contradictory reccomendation if ever there was one…

The movement towards sterilisation and eugenics wasn’t just happening in the UK and Germany.  It was a worldwide phenomena and the first International Eugenics Conference was held in London in 1912.  Attendees included Winston Churchill.

At this time, over in America, disabled people were refused entry to the US on the grounds that they would weaken the characteristics of existing citizens.

President Theodore Roosevelt could not have been more blunt: “I wish very much that the wrong people could be prevented entirely from breeding; and when the evil nature of these people is sufficiently flagrant, this should be done. Criminals should be sterilised and feeble-minded persons forbidden to leave offspring behind them”

New Statesman

Laws were introduced to stop people with certain disabilities from having children, the first such law being in Indiana in 1907.  From that point onwards in America, people with disabilities were forcibly sterilised, often without being told what was happening.  In Virginia, the law was in place between 1924 and 1979 with more than 7,000 people being recorded as sterilised.  I suspect the actual figures were much higher and included people outside the scope of the law.

Indeed, reasons given for sterilisation in North Carolina include “Pauper. Needs close supervision. Hypersexuality,” and “She wears men’s clothing all time” (at the time this was probably meant to be read as “possible lesbian”).

By 1938, 33 American states permitted the forced sterilisation of women with learning disabilities and 29 American states had passed compulsory sterilisation laws covering people who were thought to have genetic conditions. Laws in America also restricted the right of certain disabled people to marry. More than 36,000 Americans underwent compulsory sterilisation before this legislation was eventually repealed in the 1940s.

America was not the only country in the Western world to introduce compulsory sterilisation of disabled people. Sweden sterilised 60,000 disabled women from 1935 until as late as 1976. Thousands of children labelled as having learning difficulties were sent off to live in “Institutes for Misled and Morally Neglected Children” where they were required to undergo “treatment”.

New Statesman

Under these laws, I would have been sterilised because I have a genetic condition. As much as I’m clear I’m not going to have children that is my decision and I would be devastated if my autonomy was stolen from me in that way.

The introduction of these laws, in America as well as European countries, meant that after the Second World War, disabled people who had been forcibly sterilised were not considered to have been the victims of war crimes (and hence not eligible for compensation).  The reason being that other countries had similar laws to the German law which allowed forced sterilisation and indeed, other countries had had those laws before Germany.

Present Day

Forced and coerced sterilisation still happens today, even though it is clearly stated by the UN that forced sterilisation is violence.  Whilst it seems to disproportionately affect disabled women, they aren’t the only victims:

The Issue of Consent

There has, and continues to be, an emphasis on sterilising people with mental illness or learning disabilities.  Perhaps, as they are often the most vulnerable, they are also the easiest to coerce or their very disability provides an excuse – “she wouldn’t understand, she wouldn’t be able to cope…”.  And yes, there will be some people who do have difficulty understanding menstruation and sex but they could also have trouble understanding what has been done to them and why they can’t be parents.

Often in situations where people can’t easily give consent, it’s their parents who provide it.  Parents who have their own, busy lives, their own values, their own prejudices, their own desire to keep their child a child.  As far as I know, most parents struggle with their children growing up and menstruating can be part of that.  If you can stop it, can you also stop your child from becoming an adult? And if so, who is going to stop you?

Another strong argument made is there is no appropriate family planning support available.  This argument is an easy one to counter – why should we forcibly sterilise people when we can increase access to support?!  I suspect a lack of support is one reason why the choice to sterilise is made by parents – explaining to someone who’s got a learning difficult about periods etc can take time and patience and different ways of explaining and parents may not have the knowledge, resources or the time. Indeed, a 1993 study by Roy et al found that alternative contraception as a way of dealing with menstruation had not been explored by families requesting sterilisation.  Admittedly this is an old study and information has become much more widely available with the internet but I suspect that often parents are not exploring all the options.  (Note, I’ve not been able to access the study so I’m getting the info second hand).  McCarthey in 2009 found similar situations where the decision to get sterilised was made in light of exaggerated claims about the consequences of pregnancy and a withholding of information around alternative menstruation control.

Sometimes, as a parent, it comes down to firefighting and you have to deal with other things first, leaving no time for a potentially long process towards understanding menstruation and sex. Because of this, accessible information is a must along with specially trained sexual health workers.

The Consequences

And what are the consequences of sterilising children?  I’ve already written a lot so I’m not going to add any detail but children’s bodies are growing and changing and sterilisation is going to impact that.  And yet if you want to prevent someone from starting their periods, as is often argued as the reason behind it, you need to do that to an 8-12 year old girl.

In addition to physical effects of sterilisation, forced and coerced sterilisation also has psychological effects including extreme trauma, depression and grief. It also further “others” those of us with disabilities who no longer have the option of reproducing (I know adoption etc is available but that’s another area where disability works against you…).

One issue that’s come up a lot in my reading is that sterilisation is protecting people from unwanted children as a result of rape.  The idea being that if the risk of pregnancy is taken away, then these vulnerable people can then be released from institutions and allowed to participate in society.  None of this acknowledges that the risk of rape remains and that instead of locking people up or taking away their fertility we should be dealing with the abusers.  It also suggests that rape is ok provided there isn’t a baby as a result…

Alongside this is the issue of consensual sex where the people involved are deemed unfit to raise a child.  Removing the risk of pregnancy is somehow enough to allow people to live “out” in society… In some instances, people were institutionalised in order to convince them to be sterilised and in others, discharge from institutions on the condition that the person would be sterilised first. (Silence is Roaring, PDF).

Finally… 

I’d just like to add, to further complicate, or demonstrate the complexity of the issue, that I would actually like to be sterilised. As per a previous post, I struggle a lot with my period and I know I, not going to have children, partly because of my Vaginismus and partly because i have chosen not to pass on my genetic condition. Additionally, I can’t care for myself, I can’t pick up a child, I can’t do so many things related to looking after a child that I have chosen not to have children.

But the key word here is chosen. I have considered my options, I’ve made an informed decision. My choice.

Side note: despite, or perhaps because of, the history and ongoing practice of forced sterilisation, I’m actually struggling to get any medical professional to understand where I’m coming from and to agree to go ahead with the process. Perhaps because unless I’m in my wheelchair I don’t always look disabled?

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.

Disability and sexuality

edited to add links to blog posts

Woah.  So.  I had this idea for a blogpost about disability and sexuality, sparked by a blog I read and I’ve just covered a brief look at this in my future learn course.

Then I sat down and thought about it and was like where on earth do I start…

There are so many things to talk about:

And that was just a five minute throw stuff down on paper exercise…

This is clearly a HUGE issue and one which will not fit into one blog post… So.  I’m going to go away, do some reading and then come back with some more info and thoughts about some of these issues.

By the way, the Future Learn course I’m doing is great.  It’s called Disability and a Good Life; Thinking through Disability.

It’s been so much more interesting and in depth than I was expecting.  I’d kind of signed up to just see what it was like and throw in my experiences and opinions and partly to make sure that it wasn’t just lots of able bodied people talking about this unknown concept of a disabled person.  But I was so wrong.

We’ve covered so much; history of disability, disability around the world, who counts as disability, attitudes, intersectionality (which is where sexuality has come in) etc.  If they run it again, do it.  If not, they’re running a sister course in August called Disability and a Good Life: Working with Disability.