Adaptive Product Reviews: Personal hygiene (electric toothbrush, water flosser, beard trimmer)

Your teeth are going to need a number of fillings in the near future, I really recommend you get an electric toothbrush

My dentist

When my dentist warned me that I was going to need a lot of fillings in the near future, I told him I had an electric toothbrush – one of those ones that looks like a normal toothbrush, vibrates, and is disposable. I thought that was good enough, but when he told me it wasn’t, I had to start looking for a proper toothbrush, and that meant finding one that worked with the limitations I had. That was the inspiration for this week’s review – what do I use to maintain my personal hygiene as far as I can, by myself.

All the products being reviewed this week are ordinary ones. Designed for non-disabled people (or designed independent of disability), they’re things I’ve bought myself to mitigate impairment-related problems, and that’s why they count to be reviewed here!

Electric toothbrush – Oral-B Smart 6000N (link)

The Oral B 600N toothbrush on its stand, with the toothbrush heads beside it. Behind it is the toothbrush box, and a travel case for it

Shameful confession. I didn’t realise it made any difference whether I used the disposable electric toothbrushes bought in bulk in the shop when they were down to £3, or a good expensive toothbrush until I owned this one.

Before buying it, I was about to spend £50 at the hygienist to get my teeth properly cleaned. I realised it would make far more sense to follow my dentist’s recommendation, and get a good toothbrush (which I could use repeatedly), rather than a single hygienist appointment.

With that thought in mind, I went looking for toothbrushes. The cheap electric toothbrushes which are single use have their place – I would still travel with one – but having owned a proper one I plan never to go back to the cheap ones on a long term basis!

When I looked for a toothbrush I had a few requirements: good battery life (because PAs would forget to charge it), timer, tells you when you’re brushing too hard. I didn’t require that my toothbrush had 5 settings, and I certainly didn’t need it to discuss my tooth brushing with my phone! I’m very suspicious of an Internet of Things toothbrush that feeds back to me (and the manufacturer probably) about how I use it, but I ended up with one anyway. I haven’t connected it to my phone, but it offers that option.

I struggled with the arm activity involved in brushing my teeth, and didn’t really know how hard to press, so wore through toothbrushes very quickly. This one, crucially, doesn’t require the same arm work that the vibrating manual toothbrushes I used did. It’s designed so the brush is just held against each surface of each tooth, and it does the rest of the work. Alarmingly, in less than a week, my teeth are noticeably whiter – to the point that people are commenting on it.

I was seduced by the price reduction from £219.99 to £69.99, and could probably have gone cheaper. That was a lot of money to spend on a toothbrush, but it has made a difference, so I guess it’ll save me money in the long run!

Water flosser – Waterpik WC660 UK (link)

The Waterpik flosser, a white device with a tank full of water, and a long white tube leading to a small prodding device you can put into your mouth. Very difficult to describe - sorry!

I would not have called this purchase as successful as the toothbrush. I bought it because flossing ones teeth requires dexterity, and my teeth are very crowded, making it hard to get the floss between them, and meaning I didn’t really do it. I tried with the little orange toothpicks but they didn’t work brilliantly for me either, so I gave up with them. A water flosser sounded like the solution – switch it on, point it at the teeth, have it do the work, and I was convinced by the excellent reviews.

In practice this isn’t able to cope with my teeth. I point it at the gaps, but even on the highest setting, the water couldn’t get through those gaps to clean them. It hasn’t made my gums bleed like traditional flossing does, but I think the counterbalance of that is that it hasn’t been as effective as traditional flossing.

I didn’t think about it in the context of my swallow, and would suggest that anyone with swallowing difficulties avoid this like the plague. I can’t use it without ending up coughing on water, and I only have mild dysphagia, anyone with more problems could be putting themselves at risk.

I don’t think this is as effective as flossing would be, especially with crowded teeth, but this is something I can do myself, whereas flossing just wasn’t doable (and having someone else floss ones teeth sounds like a horrible experience). I do think this is probably very good for the gums and for healthy blood flow there, but it doesn’t match the hopes I had for it.

Beard trimmer – Remington Barba (MB 320-C) (link)

The Remington Barba beard trimmer in front of its box. Both the beard trimmer and the box are black

I quite like to have a bit of a beard, but if I grow more than a little one it starts to interfere with the mask I wear to support my breathing at night. My facial hair is also incredibly patchy, and my face is covered in tape from the feeding tube. I’d always gone with cheap razors because I was worried about slicing my face open with an expensive one. A few months ago, I peeled a strip of skin from my face with the razor when my arm shook, and I decided it was time to stick to a beard trimmer.

I wanted one that was inexpensive, rugged, good quality, cut hair to lots of different lengths, didn’t have a million parts, and had a rechargeable battery instead of needing plugging in to operate. The one I chose was the Remington Barba.

I’ve dropped it on the bathroom floor quite a few times without it breaking, which is a good sign, it seems to be quite hard to damage. Instead of having lots of blades you have to clip on to set the hair length, it has one set of blades that can be altered in length by turning a wheel on the trimmer. For cutting neat edges, it also has a little flip-out trimmer, which helps me aim for something vaguely symmetrical on my face.

The battery life is incredible. I rarely remember to charge it, and it still works wonderfully. It also cuts through my coarse hair very well, and I’ve never cut myself with it, which is always a good thing.

The main downside is that it doesn’t cut very short, even if you remove the blades and use it without them. This means that I always have a bit of stubble, no matter how recently I shaved. For special events, I use a proper razor (50% chance I turn up at the event with a cut across my face, 50% chance I turn up with a neat beard), but for day to day use this works very well.

What do you use and recommend for personal hygiene. Any great tips or products I should definitely try?

If you have any questions about these, or any other product, (or have recommendations of your own) just comment, email me at hale.jamie.r@gmail.com, or tweet @jamierhale

To see the other reviews in this series, go to Adaptive Product Reviews

If you make or sell a product you want me to review, drop me an email on hale.jamie.r@gmail.com

CRIPtic & NOT DYING

A white person with dark red hair sits in a black electric wheelchair against a black background. They are wearing pink jeans and a leopard print jacket
Jamie Hale on stage in NOT DYING

I’m very excited to tell you that I’ll be bringing my solo show to the Barbican on the 11th and 12th October 2019, and curating a showcase of disabled artists to accompany it – see the CRIPtic website (link)

I have been developing my solo show over a number of years, and in October 2018 took it to the Barbican to work on it through the OpenLab scheme. This was very successful, and by the end I had a show (almost – there’s still some work to do on it).

Having taken part in Transpose (link), a showcase of trans artists that has been happening annually at the Barbican, I saw that there was room in the world for a showcase of disabled artists – everything from singers and dancers to poets, actors, magicians, and anything else that can be done on stage!

I pitched the idea to the Barbican, and we decided to create a double bill – my solo show NOT DYING, and a showcase of disabled artists to accompany it.

NOT DYING is my solo poetry show about my process of coming to terms with the presence of death in my life – and how I focus on living with, despite, and through that. It plumbs the depths of misery that can accompany life-threatening illness, before changing focus to ask “how can I, as a disabled person, exist in the world?”.

To answer that question, it covers everything from comedy to tragedy, my sex life to incontinence pads, Inspirational Content to anger. It refuses to accept my life is a tragedy, whilst also acknowledging the grief of progressive impairment, and it ends on a note of joy, defiance, and resilience.

The rest of the CRIPtic showcase will be 4-6 other artists with 15 minute sets, themed around the anger, resilience, and joy of living in the world as D/deaf & disabled.

There is an open application/pitching process to perform at CRIPtic, or work there as a non-performing creative (link).

Tickets for CRIPtic go on sale in Spring. To be the first to hear, why not join our email list (link), and follow us on Twitter (link) and Facebook (link). 

You can also follow Jamie Hale’s progress with NOT DYING on their Twitter (link) and Facebook (link). 

Sign up for email updates on the Barbican ticketing here (link). You can also join their Access Membership scheme for disabled people (link), and their Young Barbican Membership scheme for 14-25s (link). 

Disability Politics: introduction

‘Impairment’ or ‘disability’? ‘Disabled people’ or ‘people with disabilities’? ‘Ableism’ or ‘disableism’? And what are the ‘social model’ and the ‘medical model’ anyway?

Image shows a cartoon that explains the difference between the medical and social models of disability. Specifically, it shows a person in a wheelchair at the bottom of the steps.  On the right is a caption saying “they should build a ramp” and on the left is a caption saying that the “impairment is the problem”)


A lot of how we understand and speak about disability depends on where we come from, and a lot of the language we use relies on very academic thinking. The reason disability activists use certain language in certain ways is often not clearly explained.
This series of blog posts is designed to explain some of these linguistic debates and clarify what people mean when they use specific language. I hope to explain what various ideas mean and their strengths and weaknesses

  1. ‘Disabled’? The medical model of disability
  2. ‘Disabled’! The social model of disability
  3. Ableism or disableism? What’s the difference?
  4. Abled? Enabled? Non-disabled? – What do we call them?

In order to understand the world, theorists rely on what are called ‘models’. These models offer a way of understanding the world that can be applied to it. They are a set of ideas that could explain the way the world, which are applied to the world in order to test it.

In this series, I will be looking at two major models, and each of them has a ‘sub-model’ which I will be exploring also. These two models are called ‘the medical model of disability’ (which closely relates to the ‘personal tragedy model of disability’) and ‘the social model of disability’ (which closely relates to ‘the affirmative model of disability’).

I will go into these models in a lot more depth as I go through this series, but in brief:

The medical model of disability: being disabled means that you have a medical problem affecting how your body or mind work. Your disability is what’s wrong with your body/mind. We will try to cure you, or treat you and make you better. If you can’t be cured or treated, society should try to treat you kindly but the focus should be on fixing you

The personal tragedy model of disability: it is a tragedy that you are ill and that you can’t be fully cured. This has ruined your life, and you will never be happy again. Disability is the worst thing that could happen to anyone

The social model of disability: disabled people are people who are being prevented from participating fully in society by non-disabled people. Disabled people have impairments (a defect or difference in function from what is considered non-disabled) but are discriminated against by society as a group. We might or might not wish for medical treatment but our primary focus should be on challenging the discrimination disabled people face.

The affirmative model of disability: becoming or being disabled shouldn’t ruin your life at all. Being disabled isn’t a tragedy. Many disabled people would rather be who we are than spend our lives wishing we were someone else. We might want treatment or cures, but we want to focus on the resilience and joy of disability. There are experiences we have received from being disabled that we could not have found any other way, and that we value immensely.

More on both of those ways of thinking later…

What do you think about the language we use when we talk about disability? Do you see yourself as disabled by a medical condition, or disabled by society? Follow this series to find out more about disability politics and language.

If you want to join in the conversation, why not comment here, message me on Facebook, or tweet me @jamierhale

Adaptive Product Reviews: Bed Edition (pregnancy pillow, slide sheets, grabber, cable ties)

……….How do you maximise your independence in bed, when you need help to turn, be positioned, and reach for things?

A conversation with a friend with similar impairments

In Carrie Aimes’s excellent blog on living with Ullrich Congenital Muscular Dystrophy she wrote about her experiences, and mentioned “I bought a satin bed sheet and wear silky pyjamas which allow me to slide myself from side to side.” This made me think about what techniques I used to maximise my own independence in bed. I realised I own quite a lot of equipment that helps me move in bed. Some of it is made for disabled people, while the rest is standard equipment that I’ve repurposed.

A lot of the time I spend working is spent in bed. I struggle to spend long periods in my wheelchair, especially as I am prone to pressure sores, and am not meant to leave my legs dangling for long periods due to an existing wound. I have a circulating air mattress on my bed which is designed to prevent pressure sores, so I do a lot of work from there.

However, even in bed, I struggle. I can never reach everything I want to be able to reach, and I am reliant on Personal Assistants to help me with everything. These pieces of equipment help me do as much as possible for myself

Pregnancy pillow & neck pillows

U shaped pregnancy pillow

I really struggle with positioning in bed. If I’m not adequately supported I don’t have much ability to use my upper body, and I tend to slip into uncomfortable positions. I have a profiling bed with airflow mattress, but this isn’t enough to position me as supportively as I need. I used to have a standard V pillow, then I discovered pregnancy pillows and never looked back. I usually buy this one but have found I needed bigger pillow cases made for it. This pillow supports me by day behind my head with my arms resting on the ‘arms’ of the pillow, while at night I’m usually positioned on my side, with one leg and one arm bent on top of the pillow, one arm under the pillow, and the pillow itself wedged against my back to stop me slipping onto my back. It has really increased my comfort, and I pair it with (as needed) a neck pillow that tightens in front of my neck FIND LINK to support my head, a small pillow behind my head, the leg break in the bed bent to prevent me slipping down the bed, and a pillow under my calves to keep my heels (prone to pressure sores) from resting on the mattress.

I always feel a bit ridiculous, especially when I’m admitted to hospital and insist on bringing this pillow – the size of a person – with me, but it’s really helpful for keeping me positioned comfortably and correctly.

The grey pillow shown above is (I think) the neck pillow I own, use, and love because it can be ‘done up’ around my neck to keep the pillow in place where it can be most supportive.

Slide sheets

Satin sheet

I really struggle to move in bed, and don’t always have a PA there when I need them – despite me having care needs all through the day and night, I have limited care funded. I was prescribed these slide sheets by an OT, and while I use them a bit differently to their original intention, they really help me remain independent and reduce my risk of pressure sores. The ones I have (which I think are these ones) are designed such that you put the base sheet on your bed satin side up, then put another sheet over it crossways on the bed satin side down, so that two PAs can untuck the top sheet and pull you up the bed on it. That didn’t work for me – the top sheet would crease and slide and slip – then I had the genius idea of just using the base sheet.

This turns my mattress into a slippery satin surface, helping me to pull myself around a bit. The risk of this is that it’s very easy to slide down the bed accidentally if sat up in the bed, so I have to be very alert to that and get whatever help I need to move back up the bed before my feet get jammed against the foot of the bed. It’s worth it though, because it gives me a lot more independence – while I still need a lot of support obviously, it does give me more movement than I would have otherwise had.

Grabber

Grabber

This is a very obvious one, but still something I rely on a lot. The grabber, always by my side, makes it possible for me to get (light) objects that are out of my reach. I chose a generic picture as I don’t have a particular grabber to recommend to anyone, but I’d be very interested in any recommendations readers have for this. I need something that is both lightweight and strong – and ideally inexpensive, though that might be an impossible combination.

Velcro cable ties

Multi coloured velcro cable ties

Just a little one here, but I find these incredibly useful. My bed has bars along the side, which means that I can attach the cables to those bars, and I also use them under the bed to hold the wires out of the way of my hoist legs. I wrap these round everything – my cables, my grabber – anything I need within reach, they can do the job.

I buy them cheap and in bulk, they’re also very useful for attaching things to my wheelchair, keeping my actual desk tidy etc – I can’t overstate how useful they’ve been for me.

What have you found useful in bed? Do you have any recommendations for things I missed?

If you have any questions about these, or any other product, (or have recommendations of your own) just comment, email me at hale.jamie.r@gmail.com, or tweet @jamierhale

To see the other reviews in this series, go to Adaptive Product Reviews

If you make or sell a product you want me to review, drop me an email on hale.jamie.r@gmail.com

Adaptive Product Reviews: Dog Edition (Julius K9 harness with panniers, jogging lead, dog poo grabber)

Me with my greyhound – Benjamin Gilbert // Wellcome Collection

…………How do other wheelchair users with limited upper body strength manage to walk your dogs independently?

A discussion between a group of disabled people with pets

My greyhound is the centre of my life. Getting him was a spontaneous decision that in many ways I probably shouldn’t have made, but I’m still deeply fond of him. Greyhounds are an immensely lazy species that require very little walking and like nothing more than to curl up and sleep. In my dog’s case, that’s on my legs, first thing in the morning – when he’ll slowly try and shuffle them off the bed to make more room for me. I had very much hoped to train him as an assistance dog, but I learned quickly that while he might have the brains for it, he doesn’t have the temperament for it – he has no desire to please anyone but himself – and I love him anyway. We’re focusing on training for the public access test as a starting point and will see where we go from there.

I can’t safely go out on my own for a number of reasons, but I still like to be as independent as possible with him, and I’m reviewing most of (I haven’t yet tried the panniers) the set-up I use when I take him on walks, although there’s always someone accompanying me.

Julius K9 harness

In the top left of the picture in orange is the text IDC by JULIUS-K9, and filling the rest of the picture is a turquoise-bodied dog harness with black straps and a black handle on top.

I use the IDC powerharness made by Julius K9, and it’s interesting how he behaves differently when  walking with me in the harness to when I’m taking him on a very short walk on-lead or someone else is walking him on-lead. There, he can pull, and will decide which way he wants to go (he can be persuaded otherwise, but is stubborn). Before I got the harness (and why I got the harness), he once saw a cat and went from walking beside me on-lead to rearing and screaming, damaging my shoulder and leaving my wrist unusable for six months. With the harness on, he walks perfectly in step with me, and isn’t distracted by other dogs, cats, or squirrels. I keep my hand loosely holding onto the grip on the back of the harness, and his lead round my waist. I can’t rely solely on holding the grip on the harness because if he pulled I wouldn’t be strong enough to resist. I never take him out unmuzzled, because greyhounds have very long noses and he can get it to the ground to pick up a chicken bone if he wants, with me unable to stop him.

The powerharness is very well made, and I bought a chest pad to make it fit him better and to ensure he wouldn’t be able to pull out of it if he tried. It’s slightly padded, but I still found that it rubbed (greyhounds have very fragile skin), so I wrapped all the straps in fleece, which ensured that it worked better. This allows me to keep him secure, and means other dog owners tend to leave us alone when I’m out with him (which is a bonus).

The image shows a jogging lead, which is bright yellow against a white background. It is in two parts. The higher part is yellow and turquoise, and is fastened in a circle. This is the belt part of the lead. The lower part is the lead, doubled over to run from right to left and back again. It has metal carabiner-style clips at both ends. The upper part of the lead is wiggly, as it is elasticated, while the lower part has an extra loop on it for one's hand.

Jogging lead

“A jogging lead?” you wonder. “You can’t even walk!” – but this jogging lead is the best lead I’ve found for him. It seems very strong and heavy duty, and gives me another point of contact with my dog. The yellow and turquoise belt clips round my waist, and the lead attaches to a D-ring on the belt. The lead has a stretchy element and a non-stretchy element. The stretchy end of the lead clips to the harness, and the non-stretchy end clips to the belt round my waist. When I’m walking him, I usually have a hand on his harness, and the loop on the lead round my wrist. That gives me a good measure of control and security, and he walks beside me perfectly. If for some reason he were to pull, the harness would slip out of my hand, and he would be “checked” when the loop on the lead caught on my hand and wrist. The odd time that’s happened, he’s stopped immediately, but I hold it such that if he pulled I wouldn’t be injured – my grip would just go and he’d have the full length of the lead. If he fully decided to run, he would get pulled as far as the belt round my waist and no further. That gives him some stretch to lunge against, but no more before he comes up against the weight of me and my chair although thankfully this has never happened. I’ve often considered trying looping the belt round my chair somewhere instead, but haven’t tried that yet. It would be far safer for me than having him round my waist so maybe next time I take him out I’ll give it a go.

Halti headcollar

I’ve always kept my dog muzzled when out and about. I trust him completely not to hurt a person, but he’s an ex-racing greyhound who likes to chase cats, and I’m well aware that if he went for a cat I’d struggle to stop him, so keeping him muzzled avoids the problem. However, I recently had the Halti headcollar recommended as an alternative. It gently guides the head of the dog in the direction you want to go in, but it also closes over the dog’s mouth if the dog pulls, leaving the dog mouth open the rest of the time. I’m trying to coax my dog into getting used to it, but in the long run I’m hoping this will train him to walk with me better, and mean I can demuzzle him – critical given that I want to train him to pick up things I drop.

I’m working on getting him used to it at the moment by supplying him with lots of treats and letting him try it on briefly – I’m hoping this will encourage him to love the headcollar.

Dog poo grabber

The image shows a black poop scoop shovel. The jaws are open, and the bucket is at the front of the picture, with the handle extending backwards up the picture.

Here I can’t recommend a specific brand – I did use this Pets At Home one, but after a bit one of the springs broke – and I struggled to use it because it required a strong grip. I’ve managed a temporary repair, but need to replace it in the long term. I’m hoping to replace with a folding one that my dog can carry in the panniers I’m getting for his harness. 

Having this is essential to give me that bit of independence that is meeting my dog’s needs myself, instead of relying on asking someone else to do it.  It makes me feel like my dog is far more my own to do jobs like this, although when the one I owned was broken, and when my grip can’t manage it, I do ask people to help with this aspect of dog ownership.

What accessories help you care for your animals? Do you have any recommendations for things I missed?

If you have any questions about these, or any other product, (or have recommendations of your own) just comment, email me at hale.jamie.r@gmail.com, or tweet @jamierhale

To see the other reviews in this series, go to Adaptive Product Reviews

If you make or sell a product you want me to review, drop me an email on hale.jamie.r@gmail.com

Verbal Scripts for Unwanted Offers of Help

A black and white image showing a London double-decker bus. The ramp is out, and a white person in an electric wheelchair is driving down the ramp forwards
Me exiting a London bus in my electric wheelchair – Benjamin Gilbert // Wellcome Collection

I can’t leave the house without encountering disableism. People always presume I’m needy, childlike, tragic, dependent. They speak past me, speak over me, and ignore me. Rarely does anyone engage with me as an independent adult, unless to ask questions about the wheelchair. In those questions, my life is framed as a tragedy.

I never know how to answer people when they insist on offering help. I don’t want to give too angry a response to a comment, when someone means well, I don’t want to escalate situations. I hate arguments. I want a reply firm enough to convey my meaning, not firm enough to get me shouted at.

In order to achieve this, I’ve developed a series of verbal scripts – statements I’ve learned in advance to help me deal with situations I’m struggling with. One of those is when people insist on helping me.

When people offer me help, sometimes they are nice, kind, genuine people, who just want to support me. In that case, they won’t mind when I turn down their offer of help, and it won’t matter whether I used a script or not. The scripts are designed to help me turn people down politely (therefore not upsetting well-meaning people), while being increasingly clear with people who are offering to help for other reasons and would get offended if I said no.

In order to understand how to turn those people down effectively, it’s useful to know why they’re offering.

If it isn’t just to be nice, or because I looked like I needed a hand, the reasons are related to people’s own self-image. They want to be seen as physically strong, and offer to lift me even where that’s impractical and dangerous for both of us. Or they want to be seen as kind and caring, and want to help me so they look like a good person. When I refuse help from one of those groups of people, it means, I’m undermining how they see themselves, refusing to let them play out their psychodrama on my body. They then react badly – get offended, huffy, upset, shouty.

My scripts are designed to avoid that. They let me refuse someone’s offer increasingly firmly, but hopefully without getting me shouted at.

If you’re reading this, you might be wondering whether this means you shouldn’t offer to help someone. I’m inclined to say you should offer, and just be willing to accept a “no” gracefully. But before you offer, look at the person and see whether they look like they need help. If I’m sat using my phone, I’m fine. If I’m straining to reach something, I could use a hand. Just don’t assume people will want your help, and don’t be upset if they refuse.

First stage

At this point the person has offered to help, but hasn’t grabbed me or forced the situation. My scripts putting the refusal of their offer first, to stop them deciding to help anyway, but are polite and appreciative.

“Do you need a hand with that dear?”
“No thank you, I’m fine on my own”

“Could you use a push up the ramp?”
“I can manage on my own but thank you for offering”

“Do you want me to pass you that?”
“No thank you, but could you please [do something else instead]”

Second stage:

At this point the person has insisted on trying to help after I’ve given them a first-line refusal, or the person has grabbed me/my chair without asking (or at the same time as asking). I’m prepared to be a lot firmer but I still want to be polite and I don’t want to antagonise them.

[person grabs my chair to push me up a ramp]
“Please don’t grab my chair. I appreciate you trying to help but it could be dangerous”

“But are you sure you don’t want me to pass you anything, it wouldn’t be any trouble”
“I don’t need your help but it was kind of you to offer”

Third stage:

Here I’m no longer trying to be polite – the grudging “thank you” is an effort to smooth over once I’ve been firm, but isn’t said in an appreciative tone at all. I’m being as firm as I get.

[person keeps pushing at my chair, I disengage the joystick to prevent them pushing me any further]
“Let go of me. This is very dangerous. Stop pushing my chair. It won’t move until you’ve stopped pushing” [when they stop] “thank you”

“It’d only take me a minute to help you, really”
“I’ve said that I don’t need any help. I can manage on my own so please let me do that. Thank you [at this point I turn or drive away a bit]”

Fourth stage:

At this point I’ve been very polite, then increasingly firm, and the other person is either putting me in danger or behaving in a ‘harassing’ fashion. I decide to try to get the public on side, because the person isn’t leaving me alone and I worry that any further refusal could turn them against me.

“This person keeps trying to push my wheelchair and it’s going to cause a serious accident.
[turn to the person] “I’ve asked you several times to let go of me. Let Go.”

“This person keeps following me even though I’ve said I don’t want their help. Please make them leave me alone”

When I give this series of responses I quite often end up with someone offended, despite my best efforts to avoid that. Generally, I just ignore them. If they say “humph, I was only offering to help”, I just let them say it. Nothing would be gained by starting an argument, and I prefer to ignore them from this point onwards. I know physically I’m very vulnerable and I don’t want to take that risk.

Do you struggle with people insisting on helping you even when you don’t need it? How do you persuade them to leave you alone without getting into a public row?

The PA Series: background

My foot being washed in bed by a PA

Over the past seven years of employing PAs, I’ve had some excellent employees, some dreadful ones, and the rest have been somewhere in the middle – with great strengths, but also weaknesses. I’ve also learned that the same is true of me as an employer – there are things I’m good at, but there are also things I’m very bad at.

Early in my time as a PA employer, I used to hire friends. Some of them were great matches for me, but us being friends made for a difficult relationship. I’ve discovered when I employ friends the same series of problems occur each time: punctuality, being able to take instruction from me as the person that decides what I want to do and what assistance I need, and them doing what’s needed, not what they want to do, 

When I started out, I’d barely even worked jobs,  I had no experience in management, and I knew nothing about how various health and social care tasks were meant to be undertaken. It was only through trial and error that I learned how to become an employer and how to get my needs met, and I made some fairly crucial errors on the way, including once lending a PA a lot of money, and being in  a very uncomfortable situation as a result.

In many ways, I think this is the greatest weakness of the direct payments scheme. Often disabled people are set free with some sort of budget to manage, some sort monitoring process and an insurance company, and are left to make our own way through the employment market. This is part of why I’m writing this series. I hope to discuss funding models in depth later on, but my priority is to write something to help other people like me work out how to make having PAs work for them. I know that needing PAs has been very bad for my mental health – it’s really difficult to take on responsibility for creating someone else’s work environment the way I’ve had to – but it can also be very rewarding.

When employing PAs goes right, I feel like I’m soaring. I have the support I need in place, and I can focus on moving on and progressing with my life. I’m not being limited by bad rotas or inappropriate care. The PAs working with me are committed and hard-working, and everything’s going well. Writing this series, I want to work out how to capture that feeling, and share it.

2018: A year in review

When this year started it looked pretty bleak – I had been very ill for a long period and we were searching for answers as to why – then they discovered a small problem which had been underlying many of my severe and unexpected medical emergencies and things started to look up. Somehow I didn’t realise how much I achieved this year until I wrote it all out – but actually it’s been an incredible year and I’ve achieved a huge amount.  In writing it all up I’ve skipped all the illness progression and medical terror of the past year to focus on the good things that have happened in my life. Here is my year in review – 2018 – you’ve been amazing, thank you! Here’s to 2019!

The floor is purplish and there are white lights in rows above, There is a person in what looks like a hospital bed. Behind that person is a big screen showing bays and curtains.
From the beginning of my poetry show, set in a hospital
The floor is blue and the camera is closer in on the hospital bed. There are sheets draped over my feet. Behind me are endless stars
From the end of the first half of my poetry show

January

I started this year still doing the Emerging Disabled Writers workshop series run at the Tate Modern. Shape Arts designed this program where a group of writers come together with a facilitator to do critical feedback work and focus on improving each other’s work on a weekly basis. I really liked the idea of this and got a lot from it, but it was also a steep learning curve, learning how to critique someone’s work fairly. Doing this made it far more possible for me to do other things later – I learned so much about myself and how I work and write.

February

This was probably the quietest month of my year, but I really enjoyed rejuvenating old friendships and seeing people I hadn’t seen in years. There’s something about people that knew you in the past providing a link for you between that and your present.

March

Around the same time as they discovered this treatable condition that had been adding considerably to my health woes and began to get it under control, I was shortlisted for Barbican OpenLab – and to my surprise and utter amazement I was given a place on it. I had applied for it in the January, and it offers you a week’s residency in the Pit Theatre at the Barbican. You don’t get to put your show on, but you get the rehearsal space and tech support. When I applied I had some poems that I called a script, and I somehow had to turn it into a show before my week at the Barbican. Thankfully my Lab wasn’t scheduled in until October, which gave me all the time I needed to prepare.

April

 I had an article published in the Guardian about Britain’s public transport system and the way it’s letting down disabled travellers

I was also invited to perform at Invisible Festival, which took place at Rich Mix. I was really happy with the set I brought together, which came from some Shakespeare (exploring having a grotesque body – “I that am not shaped for sportive tricks nor made to court an amorous looking glass; I that am rudely stamp’d”) and what it feels like to take charge of one’s own destiny amidst that. Some of the poetry I read here went on to become part of my script for the OpenLab I did later on that year. This built my confidence performing in front of audiences considerably and I really enjoyed being part of a group of disabled people making art together.

May

With the improvement brought by treating the underlying problem, I applied for Master’s courses. I was offered a place on a prestigious poetry Master’s, but ultimately felt that the intensity of the course was more than my health could manage. I had offers from several universities to do Master’s courses in areas related to health policy and politics, and began one of those Master’s courses in September. I’m determined that people like me aren’t just the topic of health funding debates – we should also be the experts at the table.

I also performed at the Saboteur Awards with Emily Robinson doing a piece called Aseptic. We wrote it jointly to Pecha-Kucha format (20 slides, automatic timer, 20 seconds per slide) to explore the ways ill and disabled bodies become medical real estate, and what it means to exercise agency as a person within that.

June

I got contacted by the Trans Creative Arts Festival and was invited to perform at a night called “Boys Don’t Cry, Boys Create”. I was really disappointed not to be able to travel up to Manchester for this because of limitations on health and social care. I was lucky enough to be able to record two videos of poems which were sent up in my absence. I wish I’d been there, but it was really important to me that my work made it up even if I didn’t. This also means I’ve got two poetry videos ready to release at some point soon!

I also had another article published in the Guardian, this one about my fears around assisted suicide becoming legalised and what that would mean for disabled people.

July

I applied for an employability course through Muscular Dystrophy UK and was offered an internship there, which I did in their policy and campaigns team. The employability course turned out to be happening on  a weekend I couldn’t manage, but I was amazed to be offered an internship instead. I found it a really positive and helpful experience, letting me establish what I could and couldn’t manage and what care support I would need in order to do it. After the course, I was offered a series of mentoring sessions, which I delayed until the beginning of 2019, but which I’m really looking forward to starting now.

August

I had an article published by the Wellcome Collection exploring what it means to be young and disabled when your life was controlled by the social care crisis.

Emily Robinson and I were invited to perform Aseptic at Crip Casino at Platform Southwark. Crip Casino was an immersive project by Abi Palmer exploring chance, luck, and institutions, and Emily and I were really pleased to be able to bring the piece again. We had a great time and met some amazing artists as a result.

I had applied for the London Writers’ Awards a while back,and to my surprise I was shortlisted, then offered one of the places for poetry. There are six awardees for poetry and it’s a really structured course, with regular feedback groups and a facilitator. In order to make time to write each day, I’ve had to be very strict with myself, but I’ve gotten a lot from the feedback groups. It feels like an honour to ~@be working with each other’s work, and giving suggestions and advice to help us improve. I’m working towards a collection of nature poetry exploring my relationship with my body, and I’m really getting a lot from this. It feels much like a poetry Master’s would feel, I suspect (though less pressured), and I’m really enjoying it.

At a similar time,I had some early interest from a press who may take a book of poetry and essays, which is an incredible feeling.

September

I started my Masters and really enjoyed it from the outset. The module I took last term focused on the philosophy of healthcare which I found challenging and invigorating, given that I’d done no philosophy before. I’m currently working on the essay for this which is hard, as I’ve never done any academic work at this level before, but I’m really pleased and optimistic about how it’s going.

October

I did my Barbican OpenLab week, and pulled together a solo show titled Not Dying, which explored my relationship the idea of ‘dying’ and how I choose to focus on living in the world. 
With this week, I went in with a basic script, and thanks to a lot of help from Liv, Laura, Liam, and my mentor Kate O’Donnell I came out with a solo show that I was able to share with a few people at the end of the week. Doing this was a dream come true – or so I felt at the time. I now can’t wait to turn the ‘proof of concept’ I developed during my residency into a full show.

(spoiler: you might just get the chance to see this show somewhere quite exciting next year – and I’ll be telling you about it soon)

I was also invited back to perform at Transpose 2018 at the Barbican Centre. I hadn’t expected to be invited back, as I’d performed at the two preceding years, but was thrilled to be able to perform there again. I brought two pieces that came from the solo show I had been working on and one new piece, The new piece is probably going to become a show of its own eventually, exploring how people ‘like me’ have always existed, even if we meant very different things by that descriptor.

November

In November I was lucky enough to see one of my favourite living poets, Mark Doty perform live. I haven’t been to many poetry performances before, but being there for that really blew me away.

December

I was invited back to perform at Bromley Disability Pride which I did, and which I thoroughly enjoyed doing. There’s something about creating art with and for people who are, on a fundamental level, “like me”.

I also performed at Transpose on its three night run at the Barbican Centre. There’s nothing like performing for the confidence, the adrenaline, the sense of self-assurance, and although I had a hard time really getting into it, once I was performing it was amazing. My work spanned lots of moods in a way that was both quite challenging and very fulfilling. After Transpose finished, I did feel a bit flat, but I went from that to preparing more work for my solo show, and thus kept the momentum up,

And the soppy bit:

Thanks are due to a number of people who’ve supported me in this (many, many, many of whom I’ll have forgotten in this list), including Toni, Alex & Angie at the Barbican; Emily Robinson for doing Aseptic with me; Claire Trévian at the Saboteur Awards; Dan Bendelman and Jenny Berman at Invisible Festival; Emma, Isabel, Lauren, Jonathan, Clair, Marion, Maddie and Nic at Muscular Dystrophy UK; Kate O’Donnell at Trans Creative Arts Festival, my OpenLab, and Transpose; Zorian and Anna at Trans Creative Arts Festival; Abi Palmer at Crip Casino; Kate, Laura, Liv, and Liam at my OpenLab week; Bobby, Ruth and Mona Arshi at the London Writers’ Awards; Nigel for mentoring me; CN Lester at Transpose, as well as Robin, Holden, Rebekah and Danielle, with Kate directing, Lucy doing lights, Kendal on sound, and Lou as Stage Manager; Nathaniel at Knight Errant;  Jack Silver for an upcoming project, and the friends, old (Tom, Vicky, Tristan, Craig, CN, Ed, Ruth, Hannah, Dan, Thines, Rosie, Rosey etc) and new (Lucy, Fi, and my LWA friends Lily, Merrie, Jemilia, Helen and Annie) who’ve made my year amazing.

Introducing: The Personal Assistance (PA) Series

I’ve had great feedback from people on my Disabled at Uni series and my Adaptive Product Reviews series, so I’m starting a third. Both of those will be continued, but I’ve found people often have questions about how I manage my social care / NHS care, and it seemed worth starting to write a guide.

I want to cover questions of funding and assessment

In it, I’ll cover some information about funding, assessments etc both for adult social care and NHS continuing healthcare (although I am not a lawyer and I cannot guarantee the accuracy of any of this information, as it comes from personal experience and that learned from other PA users). I’ll also talk about the three main types of setup – agency, PA, and family/friends, and discuss the advantages and disadvantages thereof. I’ll talk from personal experience about all of those setups and how to get the best from them.

  1. My background
  2. Care agencies – strengths and weaknesses
  3. Family and friends – strengths and weaknesses
  4. Drafting a care plan – how to adequately assess the help you need
  5. Employing PAs – strengths and weaknesses
  6. Interviewing for a PA – what to look out for
  7. So you think you want to be a PA?
  8. Interviewing for a PA role – how to do a good interview
  9. Discipline and conflict – how to navigate them
  10. Rota, paperwork, and leave – how to navigate this fairly
  11. What makes a good PA? A seven year retrospective
  12. What makes a bad PA? A seven year retrospective

This post will serve as an index for developing the series. If you want to make suggestions for topics to cover, or want to draft a guest post, comment here, message me on twitter at @jamierhale or drop me an email on hale.jamie.r@gmail.com.

Disabled at Uni

A desk with books stacked at the back. On the desk are five white dice with, instead of numbers, black letters. Lined up, the dice say (one letter per die) "STUDY".

Disabled at Uni series

This covers a number of aspects of the disabled student experience, serving as advice and guidance on studying as a disabled student, the support that’s out there, and how to access it. The posts on it are all in this category and can be found here.

  1. Applying to study
  2. Disabled Students’ Allowance
  3. Before your course begins (and who’s there to help)
  4. Accomodation, social care, and healthcare
  5. Starting to study

Studying as a disabled student can be logistically complex, with numerous things to consider. During my Undergraduate degree I received a lot of support from my (small) University, and after I graduated I took 3 years out. I returned to University to begin a Master’s this autumn, and have written this series of articles on returning to study whilst disabled. I’m hoping it will help other students facing the same challenges I faced.