Being disabled in hospital

Intuitively, you’d think hospitals would be set up for people with disabilities, long term health issues and wheelchair users. However…

When I stayed in hospital I found my preexisting and unrelated disability was treated badly. This included:

  • Not being able to go in ambulance in wheelchair – I had to transfer out of my electric wheelchair, into the ambulance wheelchair and then I could get put in the ambulance. This means when you arrive, you are reliant on hospital wheelchairs and people to push you. Both are in short supply. I got my manual wheelchair brought into hospital so had a bit more comfort and didn’t have to rely on hospital wheelchairs being available. Unfortunately it was really hard for me to get my electric chair so I couldn’t leave my bed without someone to push me.
  • This was made worse because nurses and healthcare assistants kept telling me to get off the ward and have a change of scenery. I understand the value of leaving the ward but the main friend I had visiting had hurt her back so couldn’t push me. When I explained this I was made to feel like a bad patient and there was a very clear implication that I didn’t want to get better or get out of hospital.
  • Related to this, I kept being ‘encouraged’ to walk further and for longer than I can and then all but being told off when I couldn’t.
  • I tried to ask for help getting out if bed and was told no because the healthcare assistant saw me walking on another day. My condition fluctuates and my issue wasn’t walking but getting out of bed because I had lost any core strength I had.
  • There was no help with personal care which would have been fine except my carers weren’t allowed onto the ward outside visiting hours. As a result I went days with my face not washed, my hair not brushed and my clothes not changed. It also meant I had to ask hospital staff to grab me things, to open bottles and to pour me a drink.  Some staff were fine with this, others less so but either way they had more important jobs to be doing.
  • There were no shower facilities for wheelchair users and I ended up using the one changing places toilet in the hospital to shower. This involved the cleaner repeatedly hammering on the door. I assumed it was someone needing to use the disabled toilet and rushed and kept shouting that I was only going to be a few more minutes. Finding out it was the cleaner really hacked me off…
  • Once I was able to get out of bed myself, it was in theory easier to go to the toilet.  Except because of my disability, I couldn’t physically lock the door…
  • Any preexisting health issues were ignored and I was denied morphine flat out on one occasion.  I was told because I was being discharged the next day I couldn’t have any because they don’t release people with morphine.  Even though it was unrelated to why I was in hospital and even though I have morphine at home.  I was given paracetamol and left to suffer.
  • There was a dramatic lack of understanding about my condition which would be fine and I’m happy to explain it.  However, what I don’t like is people who pretend to know about it.  There was a nurse who said she knew all about ED (which to me means erectile dysfunction or emergency department – I have Ehlers Danlos Syndrome…) and then was shocked when she discovered I was hypermobile…  There was a doctor who acted like he knew all about EDS and then couldn’t understand why I have morphine on prescription…If you don’t know, ask or at least google!
  • There was also an assumption that the staff knew best even when it came to issues like how to help me out of bed – if you hold my hands and pull, my wrists may well dislocate…
  • There were also environmental issues that would have bothered me even if I didn’t have a disability but possibly affected me more so…
    • I was suffering from migraines and these were exacerbated by harsh lighting and I would ask to have my curtains left shut to block some of it out.  These were repeatedly opened and I couldn’t get up to shut them.
    • Lights are routinely turned on at night which I understand but sleep is good for healing!
    • Being woken up at numerous points in the night to have blood pressure taken etc even once we’d reached a stage where I could have been sent home if my home care was in place.
    • Incredibly strong air freshener

I haven’t even talked about needing specific mattresses or other equipment such as a hoist or a feeding pump.  For another person’s experience, check out Emma’s blog – and look at other posts too whilst you’re there!

I’d like to end by saying that there were some amazing members of staff who were working with a lack of time and a lack of equipment and providing exceptional care despite that. There were a couple of people on my ward who I looked forward to seeing and would feel relief when I knew they were coming on shift.

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The last two years

Two years ago, September 2017, I stopped being able to swallow properly. My diet suddenly dropped to include less than a handful of options. This was to be the start of a significant change in my health and life.

In November I was admitted to hospital for the first time in my life. For three hellish weeks. I repeatedly explained to numerous people what was going on with my swallow. Repeatedly I was disbelieved. Tests came back saying I was fine and nurses reacted by telling me there was nothing wrong so I could swallow. I had my first NG tube and when I got distressed and questioned the level of discomfort I was experiencing with it the nurse told me I should have just eaten so I wouldn’t have needed it. It was clear I wasn’t being listened to with open minds. The first 16 or so days I was in hospital I was getting no food and very little (very very little for me) fluids and no medication. So that included no pain relief, no antidepressants and no antihistamines despite horrific allergies. No one seemed to understand why I thought this was a problem. I would later be sent home with ‘magical medication’ which would surely fix me and told it’d be reviewed in four weeks.

This meant four weeks with very little food because the tablets would take time to work, if they worked at all. No one seemed to understand, or at least acknowledge, why I was distressed by this. Everyone was just focused on how great it was I’d be home for christmas. There was no back up plan.

Six weeks after that, in what my nice gastro described as ‘a bit of a pickle’, I was finally re-admitted to hospital. By this point I was once again starving, dehydrated and was violently sick every time I moved. I was so ill that they couldn’t give me the NG tube I had begged for through tears just two weeks earlier. Most drs still didn’t believe me. One refused to tell me what the plan was once an NG tube was in because I wasn’t co-operating (I was violently sick when they tried to put the tube in but she read that as uncooperative). She had earlier decided that the way forward was refering me to the eating disorders team which I know is a long wait and I also repeatedly told her it wasn’t a relapse of my anorexia. She just kept asking how would I know? She went on to get me assessed by the mental health team and thankfully they realised I was in a drastic situation and was reacting much as most people would, that my mental health was suffering but wasn’t causing my swallowing issues.

I have since found out that in the run up to that second hospital admission j was hallucinating . I knew things were bad but until recently I didn’t know how bad…

Eventually the good dr won out and I was able to get the PEG tube that we both knew I really needed. The first try failed because my stomach was in the wrong place … so it took a second attempt to get the tube in me. During this hospital stay I had multiple days of being nil by mouth or tube, more days like that than days being able to eat or drink I think, because various tests were being run. They were concerned about my blood sugar levels which was ridiculous because if you havent eaten in months, they were going to be squiffy…

Whilst still in hospital I had issues with my care company and it became clear I needed to change. This has been reiterated by the much improved care I’ve had with the new team. But getting used to new staff, getting people trained up etc is all tiring, hard work. And I was recovering from starvation and all my EDS symptoms got worse whilst I wasn’t able to eat. I also gained new symptoms.

One of these new symptoms was wobbly lenses in my eyes. This limits how much I can read at once, how well I cope with movement and can lead to me feeling very seasick when all I’ve done is scroll through instagram. Yet another thing to adapt to and change to cope with. I now have pink tinted glasses which help a lot but I still have symptoms because of my eyes and I can’t see distance as well as I used to, something that means it’s incredibly difficult to use binoculars and which affects my ability to see through my camera viewfinder.

I also lost physical strength as well as awareness of my body. When I was in hospital the second time, if my eyes were closed, i didn’t know if i was laying down or sitting up. And that is something that hasn’t fully recovered although is vastly better than it was.

Today, two years on, I am incredibly grateful for my feeding tube. I no longer have to worry about my calorie intake, or how I manage to maintain my high fluid needs or how im going to swallow my medication. I have figured out the random things I can and can’t eat or drink and I’m happy with where things are. I have the energy to get out of bed, to leave the house and even to go on holiday. Everything has changed significantly. And what I’m most grateful for is that I got to share my two year ‘anniversary’ with my best friend who had shared a room with me almost exactly two years ago. A couple of weeks after my swallow broke, she put up with my odd eating and awful exhaustion. Months later, despite being 200 miles away, she spoke with my doctor and fought with them to get me the care I needed, and I love her.

Laughing at my nightmare

I have recently discovered Shane Burcaw and his wonderful sense of humour.  Quoting from his blog, I will let him introduce himself:

“I’m Shane Burcaw. I’m 26 years old, and I have a disease called Spinal Muscular Atrophy. I have been in a wheelchair since I was two. I love to laugh, and my life is pretty funny. Allow me to share…”

And if you want to take him up on his offer to share, you have a few options.  There are his books, which I read incredibly quickly, shared bits of out loud and on instagram, and have recommended to many people already.  There is his blog of course and the YouTube channel that he shares with his fiancee Hannah.

book1

And if you find him as funny and entertaining as I do, consider donating to his charity which raises money for other people with Muscular Dystrophy and helps them live their best lives.

book2

One thing from Shane’s blog that I love is the ‘What Made Me Smile’ posts and in the spirit of that, here are the things that have made me smile this week:

  • seeing the sparrows that visit my feeder get ready for winter with their fluffy feathers
  • thai food with a couple of awesome people
  • finding solutions to a couple of disability related problems, i do love a good problem solving moment
  • teaching a friend to knit
  • watching a carer read Shane’s first book and seeing her smile and laugh. NB I am not creepily staring at her as she reads!
  • getting my copy of Inside History which focuses on medicine and surgery for issue 1!

Do all disabled people think the same?

Clearly the answer is no.  But this is an interesting video which asks some interesting questions and I wanted to share my responses.  I realise this comes on the back of another blog post where I respond to questions but I’m not anticipating that this will become a trend.

Am I offended by the word disabled?

I know this is something that bothers some people, and different places have different preferred language.  For example in the UK, we tend to speak of disabled people whereas in the US, people with disabilities seems to be the preferred option.

Anyway, back to the question.  I have no issue with the word disabled.  It describes my situation and is vastly better than some of the alternatives such as differently abled or special.  I do think it’s important to remember that disability, or being disabled, is more than just wheelchairs though.  It covers physical, mental and learning disabilities and I do think that the symbol of a person in a wheelchair is too narrow.

Does this country provide enough resources for the disabled community?

It doesn’t matter where in the world you are, the answer to this is no.  Of course some countries are doing a better job than others but disability is generally underfunded, under-acknowledged and misunderstood.  There are still so many taboos and stereotypes out there and these damage opportunities for disabled people.

Are most people ignorant about my disability?

For my particular disability, things are getting better.  There is more information about there about my condition.  In terms of using a wheelchair, there is a lot of ignorance.  People still think if you use a wheelchair, you can’t stand or walk at all.  This is the case for some people but many of us can get out of our chairs.  Related to that is the idea that disability looks a certain way and anyone who doesn’t fit that image must therefore be faking.

Do I appreciate it when people offer me help?

I was in town once, in my wheelchair outside a shop waiting for my friend.  I was trying to put my coat on.  Someone came up behind me, I hadn’t heard them, the first I knew was when they grabbed my coat and started trying to help me.  I do understand it was meant well, but it could easily have led to my shoulder dislocating.  Please, do ask if you think I need help, but don’t just thrust it upon me.

Also, if you do want to help and have asked, listen to me as I probably know how best you can help me.

Is dating difficult?

Yes.  Dating requires being vulnerable and that can involve another layer of vulnerability when you have a disability.  There are also all the should I shouldn’t I’s.  You want people to see past the disability but also, especially if you’re short on energy, you want to meet up with people who aren’t going to turn out to be prejudiced.  And there are a lot of people out there who don’t see disabled people as sexual beings, people who wouldn’t consider dating a disabled person and people who assume that dating a disabled person means you become their carer.

Have I felt like a burden?

Yes.  In general, my friends don’t make me feel like a burden but strangers do all the time.  Whether it’s when I’m asking to squeeze past in my wheelchair or need a hand moving chairs in a cafe, there does seem to be two reactions.  The people who think nothing of being helpful and those other people who really make you know that they have had to go out of their way for me.

Would I change my disability?

This is an impossible question.  I would love to not be in pain 24/7 but I also wouldn’t be me if I didn’t have my disability.  Without it, I have no idea what my life would look like.  I’d be on such a different track and whilst that’s intriguing, there are things in my life that I really value that wouldn’t be with me without my disability.  I wouldn’t have had as much time to write and do art and learn about tarot and astrology.  I certainly wouldn’t know as much as I do about nature.

Am I living a fulfilled life?

When read with the above question, I think the answer has to be yes.  It’s a different life but it’s one that I have put time and effort into creating.  And even without my physical disability, I’d still have had to overcome my mental health issues.  I know what I need to do in order to feel fulfilled.  I learn, I read, I think, I create, I go out and I chill out.  Retiring meant I had to figure this out, it was that or living in a groundhog day world where I did the same nothingness every day.

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!

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