Disability and sexual health

Note, this is primarily going to be about the experience of cis women as I know more about this right now and I feel that trans disabled people are likely to have some extra barriers.  And obviously there are many different disabilities and this post is going to focus on physical disabilities.  It is also important to note that some people have had great experiences, but it is a postcode lottery.

You would think that medical buildings would be one of the most accessible places in the UK, but the reality is shocking.  Being in hospital with a physical disability was horrendous, but that’s for another post, this one is about sexual health services.

A recent report from Jo’s Cervical Cancer Trust found that:

  • 88% said it is harder for women with physical disabilities to attend or access cervical screening
  • 63% said that they have been unable to attend cervical screening because of their disability
  • 49% said that they have chosen not to attend cervical screening in the past for reasons such as previous bad experiences related to their disability or worries about how people might react.
  • 45% said that they felt their needs have been forgotten and 38% said that they feel the doctors or nurses don’t take their needs seriously

This is not ok.  Sexual health matters.  And it’s not just about cervical screening.  The issues at play with the smear test are also often found in STI testing.  All of this is putting women with disabilities in danger.

In terms of screening for breast cancer, the NHS website says:

“Mammography is a procedure that’s technically difficult. You have to be carefully positioned on the X-ray machine, and must be able to hold the position for several seconds.

This may not be possible for women with limited mobility in their upper bodies or who are unable to support their upper bodies unaided.

If you have a disability, your breast screening unit should be able to advise you if screening is technically possible, and on the most appropriate place to be screened. This will usually be at a static unit.

If a mammogram isn’t technically possible, you should still remain in the call and recall programme, as any increased mobility at a future date may make screening easier.

If a woman can’t be screened, she should be advised on breast awareness.”

And whilst I understand the physical limitations, it doesn’t feel like enough.  In the US, between 2001 and 2005, 75.4% of women without disabilities went for a mammogram, compared to 54.9% of those who have a disability.

Barriers to accessing sexual health services include, but are not limited to:

  • surgeries that are not wheelchair friendly – a shocking 63% of respondents to the Jo’s Trust survey said their GP was wheelchair accessible
  • a lack of hoists and adjustable beds
  • previous negative experiences – women with disabilities may have had more interaction with the medical community and bad experiences more generally can mean they are reluctant to go for screening.  It’s not uncommon for women to feel they aren’t listened to or taken seriously when they present with illness or disability and no one wants to subject themselves to more of that.
  • related to which is staff attitudes, and not seeing disabled women as sexual beings and hence seeing sexual health as a low priority.

“In some cases, women reported being told screening is too complex to arrange and have been told it is not possible or even asked to sign a waiver stating that they do not wish to receive screening.”
– Jo’s Trust

Attitudes and beliefs taint the way people are treated.  I’ve had GPs question why I wanted contraception and assume the only reason would be to stop my period.  This didn’t happen before I became disabled.  And if someone isn’t seen as sexual, then by extension they don’t need to access sexual health services.  This way of thinking can block innovative, or just common sense, ways of providing these services. 

These solutions might be home visits for people unable to leave their bed, buying a hoist for the GP practice or referring people to a hospital where there are appropriate facilities.  It could be having appointments which allow for women with disabilities needing longer or it could just be better training.  Sometimes it might be as basic as having an accessible GP practice which really shouldn’t be a big ask.  And sometimes it might be even simpler and be a case of including access information on the website.  I checked out the online information for my nearest sexual health clinic and there is no mention of access or blue badge parking and that in itself is a barrier than can be easily and cheaply overcome.

Other good practice ideas include having staff that are flexible, that can problem solve and who want to work with the patient to find out what works for them.  It’s possible extra reassurance may help, or a “we’ll try it and see what happens and go from there” attitude.  For some women, going in and seeing the space may help them to work out adaptations with the staff beforehand.  It might also help to have another professional on hand to help.

There are other sexual health barriers that disabled people face, for example, if someone has limited use of their hands, how can their check their breasts/testicles for lumps?  Which can make the NHS advice for women who can’t have mammograms that bit more difficult… and certainly adds to the following horrific statistic:

“Disabled women don’t have the same access to screening for breast and genealogical cancers as non-disabled women, and are up to three times as likely to die of breast cancer.”
Disability Horizons

Unfortunately, this tends to mean the onus is on the woman to keep pushing for screening and be their own advocate… And until things change, one of the most important things we can do is make people aware of the issues and keep talking about them.  Hence this blog post!

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Disability in History: Medieval Era

Around 673AD, Christianity began eating away at medical understanding, replacing it with superstition.  Illness began to be understood as something that was a punishment from God in response to sins and transgressions, or conversely the result of witchcraft, or possession by the devil.  The cure for illnesses would be prayer, penitence and pilgrimage.

Visions, such as those experienced by Hildegard of Bingen along with migraines, were thought to be messages from the divine.  Joan of Arc is probably the most famous example of this.

Alternative understandings of disability were that disabled people were closer to God because they were suffering purgatory whilst on earth, rather than after death like everyone else.  This would mean they’d reach heaven sooner.  This may be one of the factors that continued the Roman practice of having ‘fools’ in court who were able to tell the monarch the blunt truth where others couldn’t.

During the medieval period, mutilation was used as a punishment for crime, leaving visible reminders of their status and past.  Unfortunately this had repercussions on the non criminal disabled population.  The deformed or disabled body became associated with the criminal body and gave weight to the idea that you can judge a book by it’s cover; that you can tell someone’s character and morality by their appearance.  This meant that non criminal disabled people ended up having to prove their nature and fight prejudgement.

Most disabled people lived and worked within their community, supported by their friends and family.  Without this support, some people resorted to begging and others were cared for by monks and nuns.  Religious hospitals began to crop up across the country as a way of carrying out the Christian duty to shelter strangers.  As well as caring for those with short term illnesses, they began to take in those with disabilities who were unable to live in their community.

“The idea of the almshouse (sometimes referred to as ‘Maison Dieu’) developed from hospitals. Almshouses were built to provide long-term shelter for the disabled and aged infirm, and soon became a common feature of towns and cities. They were founded and supported with donations from kings, church dignitaries, nobles and merchants, all keen to ease their passage to heaven with good works.”
– Historic England

From the 13th century, the King had duties towards people with learning disabilities, including the duty to ensure they were cared for.  This combined with the almshouses and hospitals feels like a move towards a more caring, concerned society, possibly motivated by the idea of securing oneself a place in heaven.

Then would come the witchhunts.

It’s well known that women were targeted as part of the witch hunts but so were disabled people.  Anyone different, disabled and mentally ill were more likely to be targets.  Think about the stereotypical witch – she has a bent back, a disfigured face and is often seen peering as if she has sight difficulties.

“The concept of the disabled person as sinner, and as being in league with the Devil, or even being its ‘spawn’, gained tremendous traction during the Middle Ages and beyond.”
– Quarmby

The Malleus Maleficarum, the witch hunter’s handbook, was written in 1487 and declared that children who had impairments were born to witches, disabled people were proof that the devil existed and visibly impaired children were changlings.  Another popular belief was that disabled people were possessed by the devil.

The focus on disabled people can be understood through a lens of scarcity and fear.  The witch hunts came at a time when resources were limited and if a disabled person couldn’t pull their own weight then they were another mouth to feed.  By casting disabled people as immoral or unworthy, then you wouldn’t have to feel compelled to help them, or guilty if you didn’t.  Essentially, disabled people were once again a scapegoat and like as in ancient Greece, removing them from the community cleansed it.

Around the same time, major religions were informing views, such as the the Christian view of disability as a punishment and the focus on curing the disabled as well as the importance of renouncing the sin that caused it.  Alongside this was Judaism which viewed impairments as ungodly and the result of wrongdoing.  There were also ideas around possession and trying to exorcise people who likely had epilepsy but at that time were thought to have the devil in them.

These ideas influenced today’s backdrop of disability where we still find reference to disability as a result of something you did wrong, or disability as something you should fight and battle to overcome (even if that’s not achievable).  Think of how we speak about cancer and other illnesses, and how we commend people as brave and inspirational when they do something whilst having a disability.

When Shakespeare was writing in the late 16th century, he depicted Richard III as twisted in body and mind, a short cut to casting him as the villain.  Around the same time, the travelling freakshow was being born.  In Europe, fools were collected and exhibited by aristocrats and royals.  And people with deformities and intellectual impairments were being displayed at village fairs and other festive occasions.

Resources:

Disability in History: The Ancient World

“Our attitudes to imperfection and disability descend directly from the concept of the body beautiful of Greek and Roman culture. Those cultures, and the stereotypes and prejudices they developed towards disabled people, were and remain very powerful.”
– Katharine Quarmby

The attitudes that Quarmby is referring to include the idea of disability as punishment for sin, as a result of curses, as scapegoats and as monsters.  People were sacrificed for the good of the community, were cast aside and/or were rounded up into so called freak shows.  Essentially, they were dehumanised.  These perspectives and attitudes are still prevalent today.

In ancient Greece, when a tragedy had occurred it was thought to be because the gods were displeased with the mortals.  To appease them, a scapegoat was chosen and offered to the gods and these were, on the whole, so called ‘useless’ people, outcasts and beggars.  All labels that suggest a higher than average proportion of disabled people.  The scapegoat would be banished from the city, or killed, as a way of purging the area of whatever pestilence had befallen it.  By removing the scapegoat from the area, you were in effect removing the pollution.

In a similar way, babies born with deformities were also expelled from the community.  To ensure that no disabled babies slipped through the cracks, they were inspected at birth.  If they didn’t meet the standards of the day, they were dropped in a well.  Diodurus went a step further instructing that anyone who acquired a disability should kill themselves.  Underlying this cruel treatment was the Greek idea that only the fit should survive.  These ideas would be seen again in the early twentieth century with the obsession around eugenics.

“Disability was, as it is too often today, seen as shameful.”
– Quarmby

In ancient Greece, we also see the link between disability and evil, something which would be amplified by the middle ages with the advent of witch hunts.  The only real exception to the attitudes to disability were when they were the result of battle.

Similar attitudes prevailed in ancient Rome where again we find that children born with a disability were to be killed, although it would now be by drowning.  The Romans saw disabled people as freaks and a spectacle, attitudes that clearly informed the Victorian fascination with freak shows.  Romans enjoyed watching disabled people fight and if they escaped death at birth, they were in demand as entertainment.  They ‘kept’ disabled people, especially ‘fools’ as pets and Roman emperors had dwarfs in confidential positions in court, something that began in Egypt and which could later be seen in English courts.

“We spit on epileptics in a fit, that is, we throw back contagion.  In a similar way we ward of witchcraft and bad lucky which follows meeting a person lame in the right leg.”
– Pliny

“Neither the Greeks or the Romans had a word equivalent to ‘disabled’ but the term that they often use is ‘teras’ (for the Greeks) and ‘monstrum’ (for the Romans). These are the same words they use to describe mythological monsters.”
New Statesman

Of course, not all disabilities are considered equal and that was the case back then as well.  Certain illnesses or conditions that we might consider to be a disability today may have been less of an issue then.  Remember that a lot of the population were hungry, overworked slaves and that inevitably health issues that we take a pill for and move on, wouldn’t have been treated.  The lack of a word for disability means we don’t know for sure what would have been considered enough for you to be killed at birth.

Additionally, the family you were born into made a huge difference.  If your parents were rich, then you had better options.

Over in Egypt, the main concern was around genetic contamination but that didn’t mean they were cruel to disabled people.  Indeed, one Egyptian texts says:

Do not laugh at a blind man
Nor tease a dwarf
Nor cause hardship for the lame.
Don’t tease a man who is in the hand of the God
Nor be angry with him for his failings.

We see this more inclusive attitude reflected in roles that were available for disabled people, whether as musicians, servants etc.  Disability was also considered socially acceptable in Mesopotamia.  Unfortunately, we have inherited more from Greeks and Romans than we have from Egypt and Mesopotamia.

Resources

Being washed by carers

One of the most intimate parts of my care is being washed by another person.  Once my hand splints come off, I struggle to use my hands and can’t open bottles or hold a sponge without causing further hand pain.  It is because of this that my carers wash me, my entire body, yes, even there.  My entire body.

What does this mean for a 32 year old?  Well, today it’s normal.  I started having carers wash me when I was 28 and the flat I lived in wasn’t accessible.  We were having to sponge wash me at the sink.  I would sit in my dressing gown and we’d slowly work through my body.  It was cold and tiring and that was my overwhelming feelings about the matter.  They over-rode any concerns about privacy and dignity and nakedness.

But, it was important to me that it wasn’t just anyone who was washing me.  I insisted on regular carers than I could build a relationship with and there were particular carers who I chose to wash me because we had a better rapport.  One of my carers was very nervy and anxious and the idea of having her wash me wasn’t one I was ok with.  Another was incompetent and whilst that’s not great when she’s brushing my hair, it’s something else when she’s taking a sponge to my boobs…

Later I would move into a flat with a shower and whilst it was much better than sponge washes, it did change things slightly.  I was sitting in front of a fully dressed carer whilst I was completely and utterly naked.  And yet, I was ok with this, so long as I could chose the carer.  We got into routines and it was a bit like a strange dance; I start by offering my arm out to be washed, then I turn and my other arm gets washed.  Then my legs, then my back, then my tummy and so on.

Today, having carers shower me is run of the mill, it’s what we do, it’s how I get clean.  Still though, the quality of the shower is down to how good my relationship with my carer is.  I had a carer last year who I didn’t get on with, who didn’t listen and who didn’t treat me with the respect she should have.  I didn’t like having a shower with her.  She got shampoo and shower gel in places that didn’t need it – eyes, ears etc.  She didn’t like to talk whilst showering me.  She stood as far away from me as she could whilst also doing the job.  She tried to do things her own way which means the strange shower dance I have spent years perfecting didn’t work.  It was awkward and clumsy and disconnected and I felt like an object.

Similarly, carers who are prudish or standoffish make for an awkward atmosphere.  They see you naked and whilst I don’t expect to see my carers naked, I do expect to feel like I know something of the carer, outside their job.  That they have a couple of kids or a dog is enough.  That acknowledgement that we are both people.

I am lucky and I am now with a great care agency who focus on compatibility which in turn means showers are easier.  But the idea of being with an agency that sends out different people every day horrifies me.  To be showered by someone who has just met you, who doesn’t know you as a person, who doesn’t know what you can and can’t do and what might be risky or not.  It doesn’t happen in any other relationship.  The very least I would expect is to have met the person who is seeing me naked, in a physically vulnerable situation.  To have a care manager who acknowledges that I am a person with preferences and not an object.  It is not like taking a car to a car wash.  There needs to be dignity and rapport, understanding and empathy.

The vulnerability inherent in being showered by a carer must also be acknowledged:

“One person, strong and able, stands above and over another who is frail and physically vulnerable, forced to rely on their strength and goodwill… Being naked in the face of someone who is not, contains a powerful dynamic of domination and vulnerability, and it is often used in situations of interrogation and torture as a means of subjugating the individual.”
Julia Twigg

If you are washing, or being washed, by another person:

  • make sure the room is warm enough – being showered by another person is a lot colder than showering yourself
  • check the temperature of the water and make sure to either keep checking it or that the person being washed feels comfortable enough to speak up
  • non slip mats for safety
  • a shower seat can make things easier and safer
  • if the person being washed can do bits of it, let them; if they can do lots of it, they may want you to wait outside within shouting distance
  • if you’re being washed, having nice products can make it feel a little nicer
  • showering can be a good time to check for sores and rashes and bruises and such things
  • check what side of the sponge the person wants using – I want rough side for legs and soft side for top half of my body
  • having a shower routine can make things easier, less tiring and quicker
  • once showered, my carers wrap my towelling dressing gown around me and I dry that way
  • but most importantly of all, communicate, and remember that you’re helping a person, you aren’t washing a car.

Motability grants and processes

Firstly, my experience will likely be different to yours so this is my version of the journey.  However, when I got my PIP approved and was looking for information about the process and the grants system, I could find very very very little.  Hence this post.

Firstly, for me, it was a case of going to NAIDEX where I could see a variety of wheelchair adapted vehicles, or WAVS, at once.  Motability also do fairs which work much the same I would think.  Going to NAIDEX meant I could get in a range of WAVs and see what might be the right size for my needs and talk to staff about different options.

An important thing to understand is that there are many companies which offer WAVs but ultimately Motability will be renting from them, in order to rent to you.  Sound complicated?  Well, you’re having your first lesson in all of this… nothing is as simple as it might be…

You can ring the different companies to talk about your needs or to arrange test drives and demonstrations.  My feeling about it all is that it’s ultimately about the right vehicle.  Some companies provides some vehicles and others provide other ones.  Of course their service levels and how they treat you will be important but you will have this vehicle for 5 years.

Another thing to know about Motability is that they offer grants.  This is important as there are generally initial costs involved in WAVs.  The grants process seems designed to put you off… especially if you have issues with phones… Initially you ring Motability to get an application for the grant.  On that phone call you will need:

  • the applicants name, date of birth, address, phone number, email address and national insurance number
  • the length of time the applicants PIP is in place for
  • what benefits the applicant is on, specifically means tested, and what other income do they have
  • what condition does the applicant have
  • who else lives with the applicant
  • who will be driving the vehicle, do they have any points on their license, do they drive manual or do they need to drive automatic for their own medical reasons
  • what equipment do you travel with

Once you’ve provided that information, you’ll be sent an application form either by post or email but email is obviously quicker.  When I contacted them, the turn around time from receiving it back was 5 to 6 weeks.

This form will ask for:

  • everything above
  • more details about how the condition affects the applicant
  • the size of the wheelchair and your height when you’re seated, also your eye level height when seated
  • the size of all equipment you’ll travel with
  • what benefits you’re on
  • what income you have
  • how much you have in your bank accounts
  • your height and weight
  • your main drivers height and weight

When considering which WAV is best for you, think about the following:

  • do you want to be able to drive or who is going to be driving it
  • how many people will you be travelling with
  • do you want to use it for an electric wheelchair or a manual wheelchair
  • what needs to fit in the WAV
  • how important is space, comfort and smoothness of ride to you
  • where in the vehicle will the wheelchair be and how does that affect how the air con reaches you, how the radio reaches you and how you can reach the windows and speak to the driver

Think about a test drive route so that you are comparing like for like when you do the test drives.  We went for one that covered speed bumps, pot holes, lots of stopping and starting and dual carriageways.

Don’t be afraid to ask questions, to try out as many options as you need to.  This vehicle will likely be with you for 5 years, it needs to be the right one.

To my 13 year old self…

To my 13-year-old self,

I know the world seems very very small to you right now, but and this is a big but, if you hold on and you keep going and you keep moving forward your world will get so much bigger and so much brighter.

Yes you will have to struggle you will go through hard times and you will fight at times for your life more than once. But you will also meet amazing people who love exactly who you are.

You will travel to Ghana, to Bali, to Cambodia, to Ireland and to a tiny tiny place off the edge of Scotland.

You will manage an amazing team that helps people everyday and you will bridge the gap between logic and feeling, between mathematics and humanity.

You will graduate with a masters in mathematics from the University of York and realise that actually that wasn’t even your biggest achievement to date. You will realise that surviving, that keeping going even when everything felt so awful is the bravest and strongest thing you have ever done.

And know, that even when it feels like you can’t be any stronger than you are, you will be.  Your strength is ever expanding.  It will grow with you.  And you will always be strong enough.  Even when you don’t want to be.

You have some really awful years ahead of you. I really wish I could take them away but if I was to do that you would not be the person you are today. You would not have the empathy, the sympathy and the understanding that you do today.

You will have to battle your own mind and transform the version of yourself that everyone has made you believe you are and this is terrible, this is a horrible thing that you must do.  You should never have to do this and yet doing it will empower you.

You will become the artist and the caring, loving person that you would always been had it not been for that person who spent every day of your life telling you you are worthless. You overcame The Voice.  You overcame her.

At this point in your life words are just words and what you really need is action. Nothing I will be saying right now will be powerful enough to help you breakthrough and break free of the pain that you feel, and the pain that you will feel. I hope that knowing you survived and you thrived will help.

You will become disabled and you will struggle with that. You will need care for the rest of your life but you will also meet some great people through that. And you will find that independence is not the only route through life, that interdependence is a much more powerful route to take.

I hope you can summon the strength know that if you do this, if you carry on, it will be worth it.

I write this from a future that is entirely reachable.  I hope you make it.

Love me.

And yes, you do love yourself in the future.  You make it.

A short history of wheelchairs

As a wheelchair user, I started to wonder how my life might have been had I been born 100 years ago, 500 years ago or 1000 years ago and (assuming I actually survived) this would be very dependant on the types of wheelchairs that were available.  With this in mind, I ventured into the history of wheelchairs.

Early images of wheelchairs are found in stone carvings in China and on a Greek vase.  The former showing a wheeled transport device and the latter a wheeled bed for a child.  But despite these early records, the first known dedicated wheelchair was invented in 1595.  It was made for Phillip II of Spain and had small wheels at the end of the chair’s legs, a platform for his legs and an adjustable backrest.  It wasn’t self propelled but then again he was a king so was probably surrounded by servants anyway!

Sixty years later, Stephen Farffler made a self propelling chair which was mounted on a three wheel chassis and had handles on the front wheel which allowed the user to move without assistance.  The handles operated a bit like a hand bike…

Possibly the best known early wheelchair is the Bath chair, named after the city, not the washing facility.  It was created by John Dawson and had two large wheels and one small.  It was steered using a stiff handle but was very heavy and had to be pushed or pulled.  This version of the wheelchair outsold others in the early 19th century but it wasn’t comfortable and so adjustments and improvements were made over time.

In 1869 we have a patent for the first wheelchair with rear push wheels and small front casters, something we would easily recognise today.  Again, this model needed improving and a few years later, hollow rubber wheels were used, pushrims for self propelling were invented in 1881 and in 1900 we find the first spoked wheels.

Injured soldiers returning home from World War Two were more likely to survive certain injuries because of the discovery of antibiotics.  This meant that there was a sudden influx of people who had spinal injuries etc that would previously have killed them.  In turn, this meant an increased need for wheelchairs.  Depending on their injury, some of these veterans would have been unable to self propel and, having previously been active, would have found themselves dependant on others.

It was one of these soldiers, who was frustrated with his situation, who advocated for a better wheelchair.  This combined with Canada’s commitment to veteran support, resulted in a request to George Klein to build a brand new type of wheelchair.  After Canadian vets had been given their electrically powered chairs, an effort was made to engage manufacturers.  One of which was Everest & Jennings.

Harry Jennings built the first folding, tubular steel wheelchair in 1932 for his friend Herbert Everest.  They then joined forces to set up Everest & Jennings who monopolised the wheelchair market for years.  In 1956 they were the first to mass produce electric wheelchairs.  These were fairly rudimentary, had only two speeds and were very bulky but still, they paved the way for the plethora of electric wheelchairs we have today.

Whilst slightly off topic, it’s worth noting that 1952 saw the beginning of wheelchair sports and by 1960, the first Paralympic games were being held.  The increased visibility of people with wheelchairs alongside the more specialised uses for them, almost certainly aided the refinement and variety of chairs that we are now lucky to have.

Moving forward, in the second half of the twentieth century, developments to the wheelchair happened quickly.  Motors were added to standard wheelchairs, then lightweight aluminium was used and the availability of plastic inevitably led to further innovations. Further, as computer technology boomed in the last fifty or so years, we have seen these enhance and improve the available powerchair technology.

Today we have wheelchairs that can be used in sports, that are very lightweight, that can raise the user up so that we can sit at bars, that can be controlled in different ways and which ultimately allow many more people control over their movement.  Wheelchairs, powered or not, are highly customisable and although I haven’t sat in a pre-20th century one, I can imagine, are significantly more comfortable and allow for a better quality of life.

Aside, please don’t use the term wheelchair bound.  A lot of wheelchair users can walk or stand, and even those who can’t, aren’t tied to their chairs.  It also makes it seem like wheelchairs are a terrible burden and whilst they aren’t perfect, they are amazing and significantly improve people’s lives.

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