Loving your disabled body

As I discussed in a previous post, body image plus disability can be tough.  You most likely have all the normal body image, insecurities etc that the average person does but the disability can give you some fun extras… Sitting in a wheelchair makes you look fatter than you might be.  It can result in clothes sitting strangely on you.  If you dare to wear shorts with your wheelchair, you risk appearing like you’ve forgotten to put anything on the bottom half of you.  You might not be up to putting on particular clothes, your feet may reject the shoes you love, you might be very attached to your hair straighteners but find one day you can’t pick them up…  All fun extras…

I am by far not an expert on loving your body.  This post is mostly for me really… a way to help me think about different ways I can treat my body better and try and build a loving relationship with it.

In the past, one of the ways I’ve managed to get out of disordered eating habits and treat my body better was by thinking about all the awesome things my body could do.  Yes my legs might not look the way I want but hell they’re bloody brilliant at getting me places.  My body might not look perfect but I can lift this heavy rucksack and take myself off camping.  You get the picture.

This time round things have been much harder.  My body does not do what I want and doesn’t do what other people’s bodies can.  So really what’s the point…

Enter my list of things you can do to build a more positive relationship with the body which may very well cause you problems.

  • try and remember your body is you, you are your body, you are not fighting each other, you work better if you’re both on the same side.  there are enough things to battle with in this world, especially if you have a disability, try not to enter into war with yourself on top of that
  • nourishment…  food is great for your body, it helps it to heal and repair and recover and if you have a condition like eds then your body is probably in need of a lot of food because it’s probably always repairing something…  nourishment works best if it’s balanced.  chocolate counts as much as grapes.  I was particularly reminded of this when my heavy and far too frequent periods left me feeling utterly depleted.  I essentially just ate spinach in various forms for a week and whilst it’s not a magic cure, I did feel better. And I was approaching my food with the mindset that it was going to be good for my iron levels.  This helped me to feel much more positive about eating.

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  • buy nice products if you can.  I have a million allergies so I’m very limited on what I can use anyway.  My shampoo has to either be nasty tar medicated stuff which smells bad or the beautifully gorgeous, I want to eat it, “I love juicy” from lush.  One is free, the other is expensive but one reminds me I’m ill and the other makes me feel like I’m on holiday.  Plus, lush shampoo and their shower gels keep going forever.  Seriously, I know I only wash my hair once a week but we’ve barely made a dent in the amount of shampoo I have since I moved in march.
  • use the nice products you own.  I used to keep my lush shampoo for special occasions but as I got iller, my world got smaller and special occasions got fewer.  If having fantastic smelling hair makes me feel a bit better when I’m stuck in bed then I’m doing it.
  • think about what surrounds you.  Is your home filled with nice things, happy memories, blankets and fairy lights or is it just lots of medical looking equipment?

my flat has lots of little details; crystals, candles, fairy lights, lots of photos and pictures which make me feel good

  • think about who surrounds you as well.  What messages are they sending out?  If it’s all doom and gloom and oh my god I look so shit today, think about how that makes you feel.  There will always be people in your life who bring you down that you can’t get rid of but think about how you can get more positive, body positive people into your world.  In my case, this takes the form of a carefully curated online world.  I follow people on twitter, blogs etc which are about embracing who you are, about loving yourself, about accepting your body. These people act as role models, bringers of positive quotes and cute cat pictures.  It may sound like a little thing but we are constantly bombarded with messages about what we should look like and we don’t have to accept them in our homes and online worlds.  You can’t avoid them all but if you get 100 body shaming messages a day and manage to get 5 body positive ones then you’re going to be less affected by the 100.  This feels waffly, I hope I’m getting my point across.
  • notes to yourself.  If it works for you, leave yourself post-its with nice quotes, love notes to yourself etc around the place.  A little message by your mirror telling you how beautiful your eyes are might just distract you from the body hating talk that you normally get in front of the mirror.

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  • reduce the number of mirrors if they bother you BUT don’t avoid them, that will make your relationship with them worse.  I go days without seeing myself.  I have a mirror in my bedroom which is placed so that I never look in it (it’s decorative), I have a small one on my bathroom cupboard and a full length mirror in my spare bedroom which is normally obstructed by the clothes airer.
  • personalise your aids; my crutches are purple, my wheelchair is purple, i’m currently looking for a much nicer wheelchair bag… lots of people use coloured duck tape to make their walkers etc more personal.  Going out with a patterned walking stick that you’ve chosen feels much more empowering than the lovely medical grey/beige that is so frequently used.  I’ve mentioned before that I cover my wrist splints with arm warmers, partly so the velcro doesn’t destroy everything but also cos they are more me than the lovely medical beige of the splints…

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me early 2015 in Cambodia: my splints are covered in purple covers and my purple-y crutches

  • consider how you talk about and think about your body, what language are you using?  For a long time when I was in pain, “I hate my body” would be running through my head.  In those words.  It wasn’t just a feeling, it was the actual phrase.  And if that’s running through your head over and over again it becomes a reflex and an unchallenged idea.  I have mostly managed to stop it from happening automatically, just through a process of noticing and challenging myself.  When I don’t stop it, I do consciously acknowledge and remind myself I don’t actually hate my body.  When I talk to other people I have a nasty habit of using the words broken, stupid, crappy when talking about my body.  Again, this normalises the idea that my body isn’t good and it is something I am trying to challenge and reduce.
  • what does your body so or let you do? It’s very easy to focus on what your body can’t do (and that’s an important part of accepting your disability etc) but we don’t very often think about what our bodies can do.  By which I don’t mean the “active” things like running, jumping etc which comes up so often in body positive things – all great, but focusing heavily on that means we forget about the other things.  So right now, my body, despite all it’s many problems, is letting me sit up and come up with ideas and read other people’s ideas and compile them into a post.  My body protects my brain which I really value and the fat on my stomach protects my organs. Without my body I couldn’t read, write, do tarot, do art, express myself, see my friends…  These aren’t what people normally think of when asked what their body does in the context of body positivity but they are all amazing things. And I’m big on celebrating the little things.
  • do things which make you feel good and make you feel empowered. This will vary and doesn’t have to be particularly related to your body. Yoga might be it for you, for me it might be writing or doing a tarot reading. Or a small act of kindness or activism. The more empowered you feel, the better your body image.
    • Related to this, i have five things I need to do each week to keep me mentally and physically balanced and if I don’t then my feelings about my body are one of the things which take a nose dive; something restful, something outside, something creative, something intellectual and something which lets me check in with my emotions.
  • it’s ok to not like your body from time to time.  When you’re in agony cos your rib has slipped out of place, it’s ok to be pissed with your body.  In the same way that if your partner forgets to take out the bins, you can be pissed, but be pissed at the incident not the body.
  • it’s ok if it’s not easy to love your body. Loving your body when your body is causing you pain is complicated.  Don’t beat yourself up over it.  You really don’t need to add that into the mix!  Be kind to yourself.

 

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Why I don’t like the RWS tarot deck…

So the Rider Waite Smith tarot deck tends to be the one most people have, it’s very common, there’s been different editions of it and it’s the “standard” deck.

I have never been especially drawn to it but it was one of the suggested decks in 78 Mirrors.  And that’s a very sensible recommendation because it’s the commonly used deck and because many decks are versions of it (clone decks) or use the imagery as a starting point for their own interpretation of the cards.

Also, the deck is supposedly the first to add relevant images to all the cards.  Prior to this, the minor cards would display five cups instead of the more detailed imagery we are now used to.  This was groundbreaking and would make tarot much more accessible and much more useful as a tool for reflection – prior to this, you would learn by rote the meanings of the cards.

However, we have not clicked.  At all.

And I started to wonder why and as I learnt more about tarot, and hence about RWS, I found a few answers.

Firstly, it’s normally referred to as the Rider Waite deck which completely erases the artist.  Rider was the publisher, Arthur Edward Waite was the mystic who co-created the deck and Pamela Colman Smith was the illustrator.  Without her, the cards would not have been what they are today.  And yet, she received no acknowledgement in the naming of the deck which would go on to be the first mass marketed tarot deck.  She would die penniless in 1951 having received little payment for the deck and no royalties…

According to Rachel Pollack (in 78 degrees of tarot wisdom), Waite was accused of altering the cards meanings to fit his personal vision.  For example the Fool used to be portrayed more like a court jester and the Sun, depicted in the RWS deck by a child on a horse leaving a garden, used to be two children holding hands in a garden.  She also says, which I’d noted through my own use of the deck, that the pictures can completely contradict the meaning of the card.  The example she gives is the two of swords but I’ve come across it a few times as well. In addition to that the  meanings themselves can include contradictions…

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Taken from 78 Degrees of Tarot Wisdom

 

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Taken from 78 Degrees of Tarot Wisdom

From what Pollack writes, he was also had a very high opinion of himself… “He believed his Tarot to be right and the others wrong… throughout his book he scorns the versions of his predecessors”.

As the deck itself was created at the beginning of the 20th century, there is inevitably potential for it to feel dated.  Some people find the images still work for them and the story in the card is relatable for them.  However, there are religious and patriarchal aspects to them which I have found off putting.  I also dislike the male-centric nature of the cards.  These were a by product of the time and culture they were created in and so it’s very understandable, I just find that this blocks the meanings for me.  On a related note, Girl Boss Woo discusses reclaiming the Hierophant from the patriarchy over on her blog.  Her post about religion, trauma and tarot is also well worth a read whilst you’re over there.

In terms of the cards themselves, I find the images and the meanings to be disempowering and I strongly dislike the air of entitlement that I get from them.  Where in the wild unknown, the cards focus on self empowerment, the strengths within us and our hard work, the RWS deck has images of giant hands (god like), giving the reader their success or money or whatever.  The world card comes with the meaning “assured success” in my RWS deck thus invalidating all the hard work I may have done to get to that point.  If my success was “assured” then I needed have bothered!

Consider the ace of pentacles pictured below. The top row is the wild unknown tarot, middle is RWS and the bottom is Pagan Cat Tarot. The wild unknown card talks to me of the potential within, the seed of greatness in you which you can nurture into success. But the RWS card seems to be the hand of God giving you what you need for success. This feels like patriarchy patting me on the head and saying here are your ingredients, go away and bake a cake but don’t doubt, we won’t let you forget you couldn’t have done it without our help…

The Pagan Cats seem to be more of a middle ground, that cat is putting in some hard work pushing the coin up that hill.

Making use of the picture above, I also don’t like the focus on war and conquering and the traditional interpretations of the court cards. The son of cups from the Wild Unknown is a swan which is awesome and he’s artistic and introspective and romantic and I love that the creators have stepped away from the page, knight, queen and king. The cup beside him is filled with love and emotions which he has found around him. The knight of cups from the RWS deck however is riding in on his horse, presumably to woo the Princess and whisk her away. Indeed he’s holding out his cup in a very expectant way – he feels entitled to have that cup filled with love.

Obviously these are my perceptions of the card and everyone will see the images in different ways but for me, this all adds to the lack of interest in working with this deck. Except for as an educational tool to help me see where other cards have derived from and to help deepen my understanding of other decks. They also work well as a compare and contrast exercise which brings out things you might have missed or taken for granted in other decks.

If you’ve just started looking into tarot, you’ve got yourself a deck and you were excited until you started using it and then went meh… get yourself a different deck.  There are hundreds and hundreds and hundreds out there, you won’t click with all of them.  Find the one you do.  My first deck was the wild unknown and I was very lucky in that I loved it, I clicked with it and it’s still my go to deck.

Some light relief

Things have been getting a bit intense on here lately so I thought I’d offer something a bit gentler to balance it out a bit in the form of a post about books.  Note, not book review.  I’ve always been very bad at book reviews…

So, in no particular order, here are some books, authors and series (I really want to write serieses but apparently that’s not correct…) that I’ve been loving recently…

A collection of books from my days of being able to regularly read paper books (they look prettier than an ebook…)*

Robin Hobb.  I absolutely absolutely love all of her books.  I’ve devoured most of them through a mix of kindle and audiobooks.  They are fantasy books, set in other worlds, with strong characters including some fantastic female leads.

If you’re new to Hobb then this is the recommended order to read her series in:

  1. The Farseer Trilogy; Assassin’s Apprentice, Roayl Assassin, Assassin’s Quest
  2. The Liveship Traders; Ship of Magic, The Mad Ship, Ship of Destiny
  3. The Tawny Man Trilogy; Fool’s Errand, The Golden Fool Fool’s Fate (def read the Farseer Trilogy first as it’s the same characters)
  4. The Rain Wild Chronicles; Dragon Keeper, Dragon Haven, City of Dragons, Blood of Dragons
  5. Fitz and the Fool; Fool’s Assassin, Fool’s Quest, Assassins Fate (not yet released)

The series all work if you read them alone but reading all of them adds to the experience.  She also has a standalone series; The Soldier’s Son trilogy and also writes under the name Megan Lindholm.

Mercades Lackey. Sorry if you don’t like fantasy, it seems to be my prevalent genre right now.  You can find an epic list of her writing on her website.  I’ve been limited cos not everything is available as an ebook as far as I can find.  However I really enjoyed all of the Collegium Chronicles and the Herald Spy Books

I am currently reading the Elemental Masters series.  I’m a third of the way through the second.  I was describing them to someone the other day and the best I could find was historical fiction with magic.

Again, Lackey has great characters with strong women which always endears a book to me.  She’s also done a lot of collaborative writing with some great authors.

The Evermen Saga. I can’t remember why I got the first of these books by James Maxwell but I do know I wasn’t really expecting much.  I found the first part of the first book ok but not gripping but from there on, things picked up and I rapidly read all of the four books.  I’ve not read anything else by Maxwell but I would recommend this series.

The Hangman’s Daughter Tales. A series of five books by Oliver Potzsch, these books are set it German in the 1660s and follow the lives of a hangman and his daughter (really? I know, shocking!).  The daughter is a strong willed, arguably stubborn woman who finds herself in the middle of a number of bizarre and mysterious situations.  The stories unfold at a time when memories of war and the persecution of witchcraft are still raw.  The exclusion that the hangman and his family provide an unusual viewpoint for the events which unfold.

Interesting side note, apparent Potzsch is descended from hangmen, a profession which passed from father to son.

The Thief Taker and The Fire Catcher by C.S.Quinn were at one point £1 each on kindle and looked interesting.  Set in the 1600s, this time in London during the plague and the great fire, they tell the tale of Charlie Tuesday.  Charlie was an orphan who now works as a thief taker, that is, he finds stolen items.  In the Thief Taker, he is approached by a woman who asks him to find her sisters killer.  Underlying this is the mysterious key that Charlie wears around his neck.  He was given it as a child and has no idea what it opens.  As the story progresses, he unlocks some of his own history as well as clues to the murder.

The Fire Catcher is a sequel set a year later during the great fire of London.  Charlie is still looking for answers about who he is as the city burns around him, possibly destroying the very information he is searching for.  Whilst this is a sequel and does carry on from The Thief Taker, I think you could easily read it alone.

The Paper Magician Series.  Written by Charlie N. Holmberg, these books are set in a magical London in the early 1900s.  They’re interesting stories, there’s a stubborn female lead who I periodically found to be dislikeable but the books are very readable.  Compared to the likes of Hobb and Lackey, I found the two I’ve read so far to be much lighter – think takeaway pizza instead of a Sunday roast.  They are free to borrow if you subscribe to kindle unlimited and there’s an audio version as well.

Pride Against Prejudice was published in 1991 and was written by Jenny Morris, a disabled feminist.  Although this dates from the early nineties, a lot of the content is sadly still very relevant today. This well written, easy to read book looks at a few key areas of disability prejudice including abortion and disability, disabled lives being not worth living, euthanasia, disability in western culture, institutionalisation and feminist research around community care.

“We all experience oppression as a result of the denial of our reality.  If our reality is not reflected in the general culture, how can we assert our rights?  If non-disabled people would rather not recognise disability, or only recognise specific forms, how can they recognise our experience of our bodies?  If we do not ‘appear’ as real people, with the need for love, affection, friendship, and the right to a good quality of life, how can non-disabled people give any meaning to our lives?” – Jenny Morris

My copy of this (actual physical book) is now filled with post-it notes as she makes so many great points and phrases things well.  A readable book which is littered with personal experiences as well as the facts and research you would expect from an academic writer.

“To continue to live as best we can, keeping faith with who we know ourselves to be, in the face of what society has decided we are, does take courage.” – Pam Evans, quoted in Pride Against Prejudice

Scapegoat, Why we are failing disabled people. Katharine Quarmby investigates how disabled people are treated today (the book was first published in 2011).  From the back cover:

  • 80% of children with learning difficulties are bullied at school
  • Nearly 50% of disabled people have recently experienced or witnessed physical abuse
  • 90% of the population have never invited a disabled person into their home [knowingly… I assume?]
  • The number of disability hate crimes reported has risen by 75% in one year alone

This book covers some of the history which brings us to where we are today in terms of disability as well as personal stories from disabled people and their families.  The book opens with the horrific details of Kevin Davies’ death.  He was a young man who had epilepsy and was tortured and killed by his supposed friends in 2006 after being imprisoned in a garden shed.  This is not an enjoyable read however it is well written and provides an update to Jenny Morris’s book.


*Those more observant of you will notice two copies of The Midwich Cuckoos in the picture. I love John Wyndham and was happily reading my copy only to get to the centre and find ten pages missing. The book was from a charity shop but looked like it had never been read. The pages weren’t torn out, it looked like they’d been missed out during printing…  So I had to wait until my lunch break the next day so I could rush to the library, read the missing pages and then return to my copy.

Having carers, the longer post

I’ve already talked a bit about care on here before:

However, I’ve been asked a few times recently about getting carers by people who are at the point of just thinking about it.  And when I was at that point I had lots of questions and no idea where to start.  So this post is hopefully going to help with that.  If you have questions I haven’t answered, please comment or get in touch with me on twitter, @theowlgirl.

There is a BSL and subtitled video about getting care and support on youtube.

Where do I start?

First step is being assessed by your local social care team (at the council). They look at your situation, your needs, what you need help with etc. They will then decide whats going to help. It might be equipment, it might be care, for me it was both. Being assessed doesn’t force you to have care. If you do go down that route, they will do a financial assessment which is very thorough and then decide if you need to contribute towards the cost.

The needs assessment

When you contact the council initially, it’s helpful to have a good idea about the issues and what you need support with.  At least in York, they ask you lots of questions then and there on the phone.  Thankfully I had some inside knowledge and knew this otherwise I’d have been thrown and would have forgotten most of the things I need help with!

I’d strongly suggest making some notes before you make the call.  Consider personal hygiene, dressing, eating and drinking, cooking, help with medication, socialising, moving around, household chores, relationships with family and friends, your ability to take part in the community etc. The more detailed you can be, the better you’re able to get across the situation.

You will probably have adapted ways of doing things and changed your expectations so think carefully. If you are only eating ready meals because you can’t cut up veg then they need to know this. It might be you’re happy with your ready meals but equally, it might be that you’ve got used to them because they’re your only option right now. Think about how long it takes you to do things. Yes you can get dressed but it takes you an hour and causes pain. That isn’t how you should be spending your time and energy. All of this will be used to assess what support you need and if you need carers, how much time you will get.

There is an excellent breakdown of the different areas the council will look at with helpful prompts available from Rethink (PDF, page 8).

You will probably also need details of your GP.

Following the phone call which lasted about half an hour, I had a meeting with my social worker to further discuss my needs and my condition and what support would be available.  My social worker was also an OT so she also did an assessment at my flat to see what equipment could help.  She was quite flexible and we had some meetings on my lunch break (I worked at the council so we were in the same building) and some straight after work where we both got a taxi back to mine so she could do things which required us being in the flat.

If someone is currently providing care for you, such as a partner or child, they are entitled to a carers assessment which can be carried out at the same time.  This ensures that their needs are met as well.

The cost

The financial assessment looks at what income and savings you have, what benefits you get, what your rent is, how much you spent on electricity, gas and water as well as insurance and “disability related costs”. For me that includes the wheelchairs I had to buy, transport to hospital appointments, extra cost of food related to my disability (I have food intolerances), replacing clothing because recovering from anorexia means my old clothes don’t fit me etc. As part of that they should look at what benefits you’re eligible for but not currently claiming and help you claim them.

How much you pay will depend on your financial circumstances.  My care currently costs £350 a week.  My pension is £19,000 a year so it’s been worked out that I need to pay £131 a week for care (regardless of how much care I need, so if my hours increase, I still pay the same. If my care hours fall below £131 then I’d pay less). There was a while where my estimated pension was £12000 a year and at that income, I’d have paid about a fiver a week.  Essentially, for me, whatever my income is, I’ll have a “take home” amount of just less than £12,000.

Don’t wait till things are really bad…

I did this, I waited until I couldn’t consistently feed myself, I was way past being able to cook. I had been struggling to wash and dress for a long time. This meant that when I did get carers, I went straight from no care to intimate care. From never having anyone dress me as an adult to having someone running a sponge round my crotch. It was a bit intense to start with!  That said, it’s now fairly normal to have someone in the shower with me and we just get on with it.

There will be a wait

I don’t imagine, unless you are in extreme need, you will ever not have to wait. They need to sort out who you’ll be using, how much time you need, carry out a financial assessment etc.  In my case I think the time between calling the council and starting care was almost three months.

What about my independence?

I found having carers made me feel more independent in some ways. And it gave me energy back to so the things I wanted to do rather than had to. So before care, I used all my energy on dressing, washing, eating etc and had no energy and was in too much pain to do anything enjoyable.

You are also in charge of what the carer does and doesn’t do and when they do things.

I’ve done some awesome things with my carers that I wouldn’t have been able to do without them – we’ve been to the seaside, we’ve had trips to local attractions, we’ve been out for coffee, to the park and (less awesome) they took me to the other side of the country to visit my sister when she was in ICU.

What about all the horror stories you hear?

Unfortunately, it’s not always smooth sailing.  I think this is probably always going to be the case.  Some carers are better than others, some agencies are better than others, some people won’t click with you etc.  Keep with it, give people a chance but also know that this is a service you’re receiving and if it isn’t up to scratch, you have rights.

If you’re really worried, then the Care Quality Commission are the people to talk to – they’re like Ofsted for care organisations.  If you’re using an agency, talk to a manager about your concerns.

Care agency vs PAs?

I have only got experience of agency care so I can’t really comment.  I would point out though that if you go down the PA route you will be their employer so are responsible for things like tax, sick pay and holidays.  There are charities out there who can support with this and there’s a lot of information online about employing a PA.  Given the nature of my care hours, I was advised that finding PAs would be tricky; I get an hour in the morning (8.30-9.30ish) and an hour in the evening (4.30-5.30ish) plus six hours a week which are ad hoc as they’re used to go to appointments etc so can be needed at any point.

If you go down the care agency route, it might be worth asking if you can save up any hours that are not set in stone.  For example I have two hours a day plus six extra hours a week and I can save these up so I can go on day trips etc.

Other questions to ask if you’re using an agency include: Will you get the same people? What happens if they don’t turn up? Will I have set times? Will I get a copy of the rota? What if I want to move a time?

First day

On my first day of care, we started with coffee. I let them know I’d never had care before so they knew my starting point.  Ideally I would have preferred to meet my carers in advance but that wasn’t an option.  I’d say it’s worth asking though.

Having someone turn up at my door at 7.15 one morning and say hi, I’m your carer is a bit weird… Although she turned out to be my lovely carer.

You will have to explain every little thing which is exhausting. I wish I had taken my first week of care off work. You can’t just ask for a coffee, you have to say how to fill the kettle, how to turn it on, where the coffee, mugs and spoons are, how much coffee you take, that you want some cold water in it and once it’s made that you want it on the table.

If you’ve never had help getting dressed, you’re suddenly faced with all kinds of considerations; what do you do first, how do you want them to take off your tshirt – arm, head, arm or head then both arms or both arms then head. There is so much to think about when you start. And all of that is at the same time as having strangers in your home.

What if no one turns up?

Some of this depends on what arrangements you have. But chase them. Generally I would say start chasing after 15 minutes. For me, this means calling a deputy manager and if she’s not there, I have her managers number. These are in my mobile which is always by my bed so if I can’t get out of bed I can still call.

Despite saying this, I have had mornings where no one turned up and my head wasn’t in the right place to chase them. I was lucky because I was having an OKish day and could get out of bed. I also had a friend coming who helped me with everything. But this might not have been the case. So the lesson I have learnt is have a friend who is willing to chase the carers if you can’t.  And know who you can call on to come and help if your carers do let you down.

What if my carer is bad or I don’t get on with them?

If you are with an agency, talk to a manager.  You should also have regular reviews which are a chance to bring up anything which isn’t working well.  In my case I had one carer who was so unsuitable for me that i followed it up immediately.  I had another carer who wasn’t quite so bad but wasn’t great.  I kept notes about what wasn’t working and examples to share with a manager.  From my own perspective as a manager, its always easier to improve performance or make appropriate changes when you have something tangible to discuss.

Final words

Consider what’s important to you in a carer. For me, age doesn’t matter, gender does (I’m being given intimate care so the equality act doesn’t apply) but most important to me is being treated with respect and like the intelligent, independent person I am.

Getting care is a big deal, there’s lots to consider but get it right and it will have a positive impact on your life.  It also allows family members to focus more on being your husband, your child, your wife etc than providing your care.

Please please do ask me questions.  I’ve tried to cover what I thought I wanted to know but am happy to answer whatever else I can.

1st August 2016, edited to add: 

I also have a care agreement that I wrote. There are obviously lots of policies that the council and the agency will have but I wanted to put something together that was personal about my expectations. Thes are things which are very specific to me.  Whilst you’d expect them to be met, they serve as a reminder. It also means if things aren’t working well, you can refer back to the agreement,”I’ve noticed you’ve been coming in a bit early a few times recently, punctuality is important to me but as per my care agreement, I would like prior notice if you’re going to be early so I can let you know if it causes a problem” 

I have a folder in my house where my carers write notes etc so I stuck it to the front of that.

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.

Storytelling tarot spread 

I’ve seen writing inspiration tarot spreads on pinterest and thought they were interesting. Then a while back a friend asked if I’d do one for her.

I had a look and couldn’t settle on a particular spread, they all had strengths and weaknesses and in the end I pulled together the strengths and my knowledge of writing to make my own.

Half focuses on characters, their motivations and their relationship. The other half is based on the story arc idea with a card for each key point in the plot.

The reading I did for my friend was really interesting with some great stuff for writing I think. I hope so anyway!  I was inspired to do my own reading which turned out to be very different even though there were a couple of the same cards.

hj 220716 edited

Normally when I read for myself, I just note ideas down but when I did this reading for my friend, I used full sentences and wrote all my thoughts which turned out to be quite helpful. So I repeated this for myself (PDF).

Following this, an essential step is to actually sit down and write… I did a writers block spread for my friend as well. For me, I’m going to try and create a writing plan or routine which sees me do a little each week. I’d love to say each day but I know that my unpredictable pain and energy levels will mean I don’t achieve that. And once I’ve missed one day, it becomes very easy to miss another and so on… I’m thinking it might be worth adding to my Friday check in /week ahead planning.

If i don’t get far with a plan, then I’ll do the writers block spread for myself but I think I probably know my own blocks; lack of self discipline, lack of energy at times, wanting to get something spot on first time but mostly just not sitting down to write. I have all the excuses… Pain, brain fog, using the computer can worsen my pain, using voice recognition software is frustrating… But I have the time, I have vague ideas and the inspiration from the above spread, I just need to actually turn on my laptop and start drafting and jotting down ideas…

Wish me luck!!

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?