Training with Freedom Wheelchair Skills

Stuart Wheeler

On the 15th and 16th of September I did a couple of days of one-to-one training with Stuart from Freedom Wheelchair Skills.

You can check out his website here. Stuart also has a YouTube channel showing what he can do. You can check that out here.

Prior to my training I had a couple of video and phone calls with Stuart to chat through the idea of doing some training with him. We spoke about what it is I wanted out of training and what I hoped to achieve as well as my commitment to training. We also talked about Stuart being able to travel up to me to do the training as for me I’d be unable to travel down to where he is based. We also went through some questions like what kind of wheelchair I had, my health conditions, that I’m an ambulatory wheelchair user, relevant medical questions etc. This all helped Stuart prepare a plan for our training.

It really was great that Stuart could travel up and stay here for a few days and do the training with me here. That made the training accessible to me.

Why did I do Wheelchair Skills Training?

The reason why I decided to go ahead and do wheelchair skills training was because there were certain skills I was struggling to learn on my own. Gem at WheelsNoHeels has a lot of wheelchair skills videos for example, however there’s only so much you can learn from YouTube but as I learnt from Stuart you also can’t always know if you’re doing techniques correctly. I watched a few YouTube videos on how to push yourself in a wheelchair with the correct technique and I thought I did have the right pushing technique. However when I met with Stuart in person it turned out that I actually have the right pushing technique.

I wanted to have someone come along in person and show me some skills like backwards balance (wheelies) and how to get up and down curbs and steps correctly and in a way that was safe too. I wanted to learn these techniques so that I can transfer them to other situations I come across. The world isn’t made for wheelchairs so there are many obstacles we come across so learning some skills would help me navigate the world better.

Nothing beats having someone there demonstrating skills to you, giving you guidance and feedback, especially when that tuition is one-to-one.

Training with Stuart

I got so much more out of my training with Stuart than I imagined. The main skills like I said that I wanted to learn was backwards balance as I know this is a really useful skills as a wheelchair user as is getting up and down steps and curbs but I learnt so much more in my training.

Stuart observed how I normally do things and then corrected me from there. For example one thing Stuart noticed was that I didn’t have the right pushing technique so Stuart showed me how to correctly push my chair which will make it easier and save me energy.

We work on rolling up to a curb and then manoeuvring myself up and down the curb. With bigger curbs we work on a technique for getting down them. We also worked on how important communication is when someone is helping me to get up big curbs or steps with my PA.

What Stuart asks for when doing training is that I have someone able bodied who can be my ‘spotter’ for my safety during training, so that was my PA. For some skills I had a strap on the back of my chair that my PA held onto in case I were to tip back (thankfully that never happened).

We also briefly worked on one-handed pushing techniques. Stuart uses tools with his training so for one-handed pushing we used small cones in our hands to pretend they were a drink and we had to try and hold the cone level while pushing one-handed. I wasn’t so great at doing this but now as I write my one handed pushing is so much better and I can carry drinks around my bungalow without a problem. So practice makes perfect.

Stuart used other tools too like he use a rope to practice getting over it and also to measure the distance I’d pushed myself when practicing backwards balance.

I also learnt some wheelchair maintenance from Stuart as well especially around learning to have my tyres the right way on and pumping them up.

I managed to achieve a lot more than I thought I’d be capable of doing especially with my limited energy. I rested a lot beforehand so as to try and have the energy for the training. With my M.E. I actually managed to do more than I thought I could possibly do over the few days of training. I think I was running in adrenaline but it did mean I was able to make the most out of it. The Post Exertion Malaise did hit me hard afterwards as I expected it would but it was one of those occasions where the PEM was worth it.
On day two I actually managed to push myself the furthest I’ve done (apart from the time I went to a big garden centre with Dad and we couldn’t take my Batec with us) - normally I’d take my Batec to that location so it goes to show how far I went. However that was what the training was for: pushing myself (quite literally!) As we went along we practiced skills we’d been learning like curbs, going down big curbs, and backwards balance on grass and tactile pavement. Stuart also gave me some tips that he would do as a wheelchair user himself. He also showed me about using things around me like a bollard to swing around to turn my chair letting gravity take me, all things that save you energy from pushing your chair.
I really like Stuart’s style of teaching. After every attempt he’d ask me how I think that went and he’d then tell me how he thought it went and would give me advice on how to improve for next time. His teaching style was very constructive. We’d practice repeatedly but not so that I’d get bored of what we were doing. We also worked at my pace and took breaks so I didn’t tire out so I could continue and make the most of the time Stuart was for. Stuart was very friendly and easy to get along with.

Post training & Summary 

I got so much more out of my training with Stuart than I imagined. The main skills like I said that I wanted to learn was backwards balance as I know this is a really useful skills as a wheelchair user as is getting up and down steps and curbs but I learnt so much more in my training.

Stuart observed how I normally do things and then corrected me from there. For example one thing Stuart noticed was that I didn’t have the right pushing technique so Stuart showed me how to correctly push my chair which will make it easier and save me energy.

We work on rolling up to a curb and then manoeuvring myself up and down the curb. With bigger curbs we work on a technique for getting down them. We also worked on how important communication is when someone is helping me to get up big curbs or steps with my PA.

What Stuart asks for when doing training is that I have someone able bodied who can be my ‘spotter’ for my safety during training, so that was my PA. For some skills I had a strap on the back of my chair that my PA held onto in case I were to tip back (thankfully that never happened).

We also briefly worked on one-handed pushing techniques. Stuart uses tools with his training so for one-handed pushing we used small cones in our hands to pretend they were a drink and we had to try and hold the cone level while pushing one-handed. I wasn’t so great at doing this but now as I write my one handed pushing is so much better and I can carry drinks around my bungalow without a problem. So practice makes perfect.

Stuart used other tools too like he use a rope to practice getting over it and also to measure the distance I’d pushed myself when practicing backwards balance.

I also learnt some wheelchair maintenance from Stuart as well especially around learning to have my tyres the right way on and pumping them up.

I managed to achieve a lot more than I thought I’d be capable of doing especially with my limited energy. I rested a lot beforehand so as to try and have the energy for the training. With my M.E. I actually managed to do more than I thought I could possibly do over the few days of training. I think I was running in adrenaline but it did mean I was able to make the most out of it. The Post Exertion Malaise did hit me hard afterwards as I expected it would but it was one of those occasions where the PEM was worth it.

On day two I actually managed to push myself the furthest I’ve done (apart from the time I went to a big garden centre with Dad and we couldn’t take my Batec with us) - normally I’d take my Batec to that location so it goes to show how far I went. However that was what the training was for: pushing myself (quite literally!) As we went along we practiced skills we’d been learning like curbs, going down big curbs, and backwards balance on grass and tactile pavement. Stuart also gave me some tips that he would do as a wheelchair user himself. He also showed me about using things around me like a bollard to swing around to turn my chair letting gravity take me, all things that save you energy from pushing your chair.

I really like Stuart’s style of teaching. After every attempt he’d ask me how I think that went and he’d then tell me how he thought it went and would give me advice on how to improve for next time. His teaching style was very constructive. We’d practice repeatedly but not so that I’d get bored of what we were doing. We also worked at my pace and took breaks so I didn’t tire out so I could continue and make the most of the time Stuart was for. Stuart was very friendly and easy to get along with.

I would have liked to have gone to a particular local shop that I struggle getting in and out of. I would have liked to have practiced how best to get in and out of the shop. However I feel like I’ve learnt enough skills to transfer to my everyday life so I can now face obstacles, as less face it the world isn’t built for wheelchairs, and know how to tackle them.

I did contact Stuart as I was worried I couldn’t practice as much as I wanted to be doing due to a change in my care circumstances. Stuart kindly called me that day and reassured me to just do a little training where I can so if I’m in the cul-de-sac practice a few of the curbs (but not the big ones) and practice my pushing technique. He reassured me not to be too hard on myself and these skills will come to me in time. I felt frustrated as post-training I wanted to be practicing each day (when I’m having a good day) out in the cul-de-sac or pushing myself down the road to practice or spending 5 minutes perfecting my skill at backwards balance. I’m so eager to practice and now I can’t really do much but Stuart’s reassurance was helpful and kind of him to contact me.

We’ll catch up officially a month post training via video call to see how I’m doing. This like with the pre-training calls are all part of the service that Stuart provides. I’ll be disappointed to report my lack of progress but I’ve kept Stuart in the loop.

I’m hoping when on on my other PA’s is back from holiday and is up for it, once I explain what she needs to do with the strap on the back of my chair so I’m safe, I can practice more skills like backwards balance and the bigger curbs. As well as being able to go somewhere where I can push myself a little further in my chair. Just so I have something to report to Stuart on making a little progress with my practice.

I think I’m getting a little better practicing here-and-there in the cul-de-sac. I’m trying to remember not to charge at things and to relax as hitting curbs is when I might throw myself out of my chair and I don’t want that to happen. I think I’m getting a a little better at getting up the smaller and bigger curbs in the car park. I’m not always spot-on. Sometimes I hit the curb or land clumsily or I land too late or early. However I am getting there at times on getting the technique done how I feel what is pretty spot on and I find that really motivating.

When I’m practicing I’m mindful of my energy levels and not tiring myself out so I don’t practice for too long. Just little and as often as I can (especially without a PA at the moment).

I want to try and film some of me training some of my new skills and me practicing too.

I definitely feel my training was Stuart was well worth it. Especially the hands-on 1:1 training I got and the fact Stuart travelled up to where I live as well. Stuart was also really accommodating when I needed to rearrange the dates of the training as well and also to plan the days of the training to be on two days when I’d be having a long day with my PA so she could be there with Stuart and myself.

I definitely do feel a more confident and capable wheelchair user now especially as I use my wheelchair so much even though I am an ambulatory wheelchair user. Whenever I go out however I do need to use my wheelchair and the world isn’t built to accommodate for wheelchair users even new buildings now. So I now feel I have some transferable skills to use to negotiate the world as a wheelchair user, especially as someone who is an active wheelchair user.

   Practicing backwards balance   

Tech that makes my home easier

I’ve recently made some changes to my bungalow to make life easier for me. People think smart homes are for tech nerds or lazy people. In all honesty I think smart homes are great for people with disabilities. I know it’s given me a lot more independence over my own home.

One the plus side too thankfully my bungalow is small so there are few rooms and windows when it comes to decorating making it a bit cheaper and with it being a new build property and small as well it doesn’t take long to warm up and it retains the heat.

Smart lighting, switches and plugs

I’ve always had smart lighting in my home right from when I moved in nearly two and half years ago. Initially I just had smart bulbs in the lamps to make it easier for my care team to control the main lights in the front room and bedroom. However after a while I found for myself I needed smart bulbs in my main lights for my own ease of using my home. As a compromise I bought smart light switches for the bedroom and front room so at least there was something “normal” someone could press to control the lights rather than trying to talk to my Apple HomePods.

For smart lighting, light switches and smart plugs I like the Philips Hue system. I just have a bridge so it connects to Apple HomeKit. 

What I like about all the Philips’ products is that if that if any of the devices are accidentally switched off, say someone turns off the lights switch for my main light or my smart plug gets turned off. Just turning it on reconnects it all and it’s back up and running no need to do anything else. 

The smart bulbs I had in my lights back in my bedroom at my Dad’s however if someone turned off the light switch I’d have to reset the whole system and do a total reboot and also reconnect it back onto Apple HomeKit, it was quite annoying and a faff to do as sometimes you’d have to reboot it a couple of times. 

Smart light switch

 I’ve found the Philips Hue system is much better and they have a lot of products in their range, such as light switches. The only downside is that their products are often more expensive so their smart plugs are more expensive than other smart plugs that you can buy. But like I said the quality and connectivity is much better.

The smart light switches are handy. They act similar to a normal light switch and the you can dim and brighten the light on the switch and flick through lighting modes too. The controller is magnetic so can come off as well.

Smart lighting really helps as I can control the colour of the main lights on my phone (I’m not keen on the new automatic adaptive lighting colour as I don’t like white lighting). I can voice control the lights and lamps coming on and off and how dim or bright I want them to be. I can do this on my Apple HomeKit app too. I have set scenes too like Philips Hue has a ‘reading’ scene with the lighting at the right colour and brightness for reading. Or I have my Nightlight scene with the lamp set at 1%. I have quite a few scenes and I select what smart devices I want to be part of that scene. Leaving the house automatically everything turns off so I don’t have to forget about anything except the bathroom light. 

Being able to set my lights with my voice or phone I find really helpful and accessible as there are times when I can’t get out of bed turn off the main light, plus I’d have to install dimmer switches everywhere, as well lamps don’t dim but with a smart bulb they can.

Electric blind

I’ve recently had an electric blind put in my front room. Before I had a manual pull cord Roman blind and the pull cord was in an awkward position to reach and not just myself found it difficult to lower the blind. Getting an electric blind has made a massive difference. It’s so easy to lower at night as it’s set to stop at a certain point. Then in the morning I just press a particular button on the remote and it heightens to my ‘favourite’ position, as I don’t like it up all the way. It’s also easy to control to lower and stop more by just using the remote. Having an electric blind has been so much easier for my PAs too as if they’re leaving me in the bed for the evening it a lot easier for them to close the blind in the front room for me.

Front room remote control blind

Smart blind

Very recently I’ve had a smart blind put up in my bedroom. I only recently a few months ago found out about them and started looking into them and where I could get them in the UK. I went with the Eve Motion from my research as that was what was compatible with Apple HomeKit. (I found there was more options if you say had an Alexa or Google home system, like with my roller blind in my front room I could buy a bridge for that to connect to say my Alexa home system).

I can control it on my phone as well as with my voice. - I got a remote too just to make it easier for my PAs to control it. Already I’m finding it beneficial. When I wake up I say ‘Good Morning’, a scene on my Apple HomeKit and that heightens my blind a little so I can start adjusting to daylight. - Something I struggle with due to light sensitivity because of my M.E. Then on my ‘Daylight’ scene the blind opens up more so I can have enough light in my room like that or my Venetian blinds behind them can be opened if I can cope with the additional light.

My smart blinds have given me a lot more independence as I’m able to open them myself in the morning, I don’t have to struggle reaching over for the cord which a lot of the time I couldn’t manage. Also when my PA leaves me in bed for the evening she doesn’t close the blind for me now. The Venetian blinds are closed for me if they’re open but I can have daylight until I want to close the blind myself. I have a couple of scenes set on HomeKit like ‘Bedtime’ where the blind closes and the bedroom lamp comes on at a certain percentage. ‘Goodnight’ turns all lights and plugs off and closes my smart blind. Unfortunately I can’t link my front room blind into my HomeKit. It would be great to have that as as a smart blinds too one day but for now it’s not needed (plus I love the print on my electric blind).

I find the blind gives me more control and independence. Like today I was resting and wanted less light in my bedroom. So easily I could go on my phone and lower the blind to just where I wanted it so I could rest and not be bothered by the light. But now I’m more rested I’ve adjusted on my phone the hight of the blind to let in more light. I don’t have to struggle reaching over for the pull cord and manually lifting and lowering the blind. It just makes like easier for me as well as giving me more control and independence. It’s another thing I can do on my own now.

Good morning scene on my bedroom smart blind

Hive smart thermostat 

Combi boiler Hive thermostat

This is something I’ve wanted in my home for a while but my housing association put in a lot of rules to me installing it so I put off getting it. I wanted it last winter but because of this I didn’t go ahead. Then I decided to go ahead and get it as I envision myself living here quite a while hopefully so I’ll get my money’s worth out of it and it’ll better me the sooner I can get it.

I used a heating company, the one my housing association use and I asked them to install it and the installation included all the Hive equipment so I definitely got my money’s worth as I was looking at a much smaller and cheaper model than the one I have now and I didn’t realise I needed all the other bits that came along with the installation alongside the thermostat itself.

Already with it getting a bit chilly I’ve made use of my smart heating system. It’s set up like everything else on my Apple HomeKit so I can voice control as well as control the heating on my phone. Both on the Hive app and on HomeKit. There’s also ‘shortcuts’ set up which are voice commands for certain settings like boosting the heating to a set temperature for an hour (more on shortcuts below). I also have my heating set up to ‘scenes’ on my HomeKit like leaving the house or ‘Goodnight’ turns the heating off. More towards winter I’ll add the heating to other scenes like ‘Good morning’ I might have the heating come on for a short while to warm my bungalow up.

Like with my smart blind my Hive gives me more independence. If a carer is leaving me in bed for the evening if I’m having a bad day instead of them closing the blinds and leaving me cold as they’ve had to turn off the thermostat I can now do both of these functions entirely on my own and when I want too.

Dyson hot+cold fan

I can voice control my Dyson fan through voice controls sets up via shortcuts I’ve created. So when I ask Siri such as my HomePod ‘turn on the fan’ it comes on a cooling mode at level three. If I ask Siri to ‘turn up the fan’ it will increase the fan to number six. I also have ‘turn on night mode’ and the fan will turn on that setting. I have commands for the heater on the fan too but now I have my Hive heating I never use it so I’m considering getting rid of my hot+cold fan which I needed when I bought it but now I more just need a Dyson cooling fan.

HomePod

Front room HomePod

My two Apple HomePod mini’s also really help and they can do many things too that make life easier for me. I have one located on top of my bedside and the other on the worktop in the kitchen so they both cover my whole home.

I use them for timers and alarms for things like cooking, reminders (such as 1pm to remember to each), pacing to help manage my energy levels and activity doing, reminders to go to the bathroom which helps me manage my catheter, getting ready such as if I have an upcoming video account and so much more. I can also know the weather as the temperature and humidity of my bungalow. When I’m unwell and in bed and can’t speak loudly I can intercom to the HomePod on the kitchen counter to speak with my PA/carer; I find this really helpful. I can ask the HomePod to do many other functions like add things to my shopping list, add things to my list of to-do reminders list, request specific music or podcasts to play, I can look things up buy asking the HomePod questions and so much more. It also works as a speaker to play media.

The HomePod makes life easier for me like I said with the intercom. It also helps me because I can voice control via my HomePod many devices around my home. I can turn smart plugs on and off, ask lamps and lights to turn on at a certain percentages. I can open my blind at different levels and close it. I can control the heating as well. All these things give me so much more independence over my own home.

Like I wrote above I have set scenes on my Apple HomeKit too. So when I wake up I say ‘Siri Good Morning’ the HomePod will say good morning back to me and will do the functions set on that scene. If I say ‘Siri Good Night’ it will say good night back to me and all plugs and lights will turn off, the blind will close if it’s not already and the heating will turn off too. I have quite a few different scenes that when needed I just say to the HomePod ‘Siri [then the scene name]’ and then that scene will be set. Or I could say ‘Siri boost heating’ or ‘Siri turn on the fan’ which are voice shortcuts I’ve set.

I find being able to voice control my home via my HomePod really easy and it increases my independence, especially as there is so much my HomePod can do. I have more control over my home and I like how I can control the lighting in my home especially my bedroom. I can get my HomePod to make my bedroom a really low-light room which is great for my M.E., migraines and wanting to rest.

I love the little stand I have for my HomePod in my front room too and I love the yellow too as when I bought my first HomePod the options were only white or black so I went for a white one which is in my bedroom.

I can also control how loud the HomePod is, I often have it speaking on the lowest volume especially the one in my bedroom. I’ve also chosen what voice my HomePod talks to me as too. Sometimes my HomePod can be a bit sassy and get things inconsistent correct liked punched pies instead of bunched chives on my shopping list (it can be amusing what she comes up with on my shopping list). One good thing I like about it is that I find it doesn’t listen in unlike other devices like my Dad says about his Google Home system. My Dad gets targeted ads and product recommendations and things like that but I get non of that which does help to not feel like I’m being spied upon in my own home. 

So, in summary…

I am writing this from the perspective of someone who uses Apple products but I’m sure you’ll be able to find all of this products that will be suitable for someone with an android phone or who uses Alexa or Google Home etc.

As someone with disabilities all these products make my life so much easier and they’ve given me back my independence, especially independence over my own home as I want to be able to be capable of living on my own and doing as much for myself as possible. These products also even give me independence on my bad days when I lose independence in other areas of my life.

These products would benefit people with a wide range of disabilities from spinal cord injuries, limb differences, M.E., Multiple Sclerosis, Chronic Regional Pain Syndrome, POTS, stroke and more.

These products will especially help those who live alone or live in an annexe attached to their family home and want to live more independently like myself. It will mean less reliance upon carers, PAs or care givers which is an absolutely amazing feeling to be able to do these things without asking someone to do things for you. Like for me being able to put my own blind up and down in my bedroom now myself is amazing and I love having the control over my heating on my own now too as before there were many times I couldn’t even put the thermostat on as the box was too high. Now I don’t have to be cold or feel uncomfortable over the lighting in my bedroom.

These devices aren’t for lazy people, they give disabled people back their independence and control over their own homes.

Life with chronic pain

September is Pain Awareness Month.

Name a type of a pain and I feel it. I’m not exaggerating when I say that I feel different types of pain, having multiple diagnoses each coming with their own types of pain mean that I do just experience different types of pain. 

Some pain days are better than others. Some days my pain is manageable and all I need is my regular medication to keep my pain manageable. Other days I can’t settle and I feel in despair over my pain levels; when I’m throwing all my pain management tools at my pain but still nothing is giving me any respite. 

In my bullet journal for this year I have a ‘Year In Pixels’ where I colour code each day marking each day from green to yellow to orange to red for my pain and fatigue levels each day. My really good days I mark down as green, a typical day I’d mark yellow, a bit of pain where I’ve used some additional pain relief I’d mark orange and those horrendous pain days I’d mark down in red. I probably am quite positive when I mark my pixels and I try to reserve the red days for those times for when my pain is leaving me in despair.

I take different types of medications a supplements to tackle the different kinds of pain I experience. Muscle spasms that leave me rigid, nerve pain that feels like a white hot nail is being dragged down, headaches and migraines, bladder spasms, generalised pain that can leave me so hypersensitive it’s painful for anything to touch my skin or I just get “pain” especially in my legs that I find hard to describe.  

I’m generally quite hypersensitive anyway because of my severe M.E. Noise and light and sometimes touch all cause me physical pain. It’s hard to explain how things like noise and light can cause physical pain, it’s just another unexplainable ‘M.E. thing’. Just like how my legs just deeply ‘hurt’ but I can’t describe the pain other than just a deep and intense hurting pain accompanied with hypersensitivity.

I don’t like to just rely upon medication to help with my pain. I like to take a holistic approach to my care including treating my pain. I’m not a person who will just sit back and let my doctor write out prescriptions and expect that to do all the work.

Massage therapy is one big thing that massively helps with my pain and when there’s been gap in my regular appointments I really notice it. I notice that my circulation is worse, I have more muscle  spasms and ridgitity too, I have more pain in my joints and my headaches are worse. All things and more Hollie my massage therapist targets when she does my massage therapy. My massages aren’t the ones you’d have at a spa. What Hollie does and is trained to do is to treat people with chronic health conditions and the physical symptoms. No two treatments are ever the same as Hollie always targets what’s bothering me the most each time I see her. She uses additional things to help my symptoms while treating me too, like heated mitts, hot compresses and hot stones. I can’t begin to say how much of a benefit massage therapy has been to me over the past couple of years. I honestly think it’s kept me going so well that it’s the reason why I’ve had so few increases in my medication doses over the years. I’ve had no increases in my pain relief at all which is amazing.

I always use the term ‘pain relief’ instead of ‘pain killer’ as my slow release pain relief and my breakthrough pain relief medication does just that, it gives me relief from my pain, it doesn’t kill or eradicate my pain completely (as much as I would love that to happen). Sure they help a lot and allow me to just about function each day and to have some form of quality of life, however my pain will still always be there to some degree in the background and my breakthrough pain relief will just give me som respite, some relief from the extreme pain I’m in.

As well as massage therapy I find heat really helps my pain too. I enjoy my hot baths in the morning. I also have electric heat pads and a heated blanket. I have hot water bottle and also a long hot water bottle that I find good for bladder, hip, back and shoulder pain. I have a rechargeable period heat pad that I use for bladder pain.

When I can tolerate it I really find my weighted blanket helps too.

I used to be able to tolerate my TENS machine that I found really helpful. It had a heat up part to it as well which I found helped too. I haven’t tried it in a while to see if I can still cope with it. I have my acupuncture/TENS pens that I can sometimes tolerate too so maybe I could tolerate a short session on my TENS machine on a good pain day maybe?

I find mindfulness helps too. Doing body scans (I have to find the right body scan exercise that doesn’t make me think about each part of my body for too long) I find good and have been recommended to me by pain specialists. I find visualisation meditations really effective as well as breathing exercises and soundscapes too. I use these during rest periods as I find regular rest periods help to prevent me from ‘booming and busting’ which among other symptoms makes my pain levels worse.

Pacing is important to manage my symptoms including my pain levels.

I find distraction helps as it takes my mind off my pain. Activities like colouring, crochet, iris folding, reading or listening to books or podcasts, any low-level activity that doesn’t use much energy I find helps take my mind off my pain.

I find this especially in the evening when I’m struggling to get off to sleep due to pain. I call my insomnia due to pain ‘painsomia’. My pain does affect me at night as I just lay in bed and I’m more hyper focused and hyper aware or the physical sensations and pain in my body and as a result the pain probably becomes more psychologically intense. I take breakthrough pain relief as I physically am in pain but I want to do something else to help my pain as well so I’ll put my audiobook on and lay and listen to that, or if I’m more restless I’ll do something creative or I might get myself a hot drink. Things that help my sleep problems as well as my pain.

When I can, physical movement helps too. I find it helps to keep my body active. I do my daily physio or instead I might do some yoga aimed at people with chronic illnesses. I’ll just do what I can within my restrictions and I just do 5/10 minute routines and I find this helps me mentally too to know that I’m staying active to aid my wellbeing and add to that holistic approach. If I’m in pain I find it helps to just move, stretch, wiggle etc. especially when it comes to my joint pain. I just stay mindful whenever I do yoga not to do something that would worsen my Ehlers-Danlos as that would just create more pain! I’d love to try movement in water in the form of hydrotherapy.

Another funny thing about me and living with pain is I always save my number 10 on the pain scale. Just in case I’m ever in a situation when I neeed my 10 but I’m sure even when that day comes I’ll still say 9. Stupidly my local hospital are now using a 1-4 pain sale. If I save my 4 there they won’t give me adequate pain relief. The 1-4 system really doesn’t work for people with chronic pain as when I’m asked what my pain is like usually I really don’t sound believable. I probably sound like someone seeking the best drugs they have and they have little clue about my conditions so me explaining my needs and care to them only worsens the situation. Unfortunately when you live with chronic pain you often have negative experiences in healthcare. I have had some positive experiences however but it’s hit-and-miss.

More awareness of chronic pain and how it affects individuals and listening to patients on an individual level is much needed as we’re all affected differently. We all have different medical conditions that affect us differently and the pain part of the that affects us uniquely too.

Links:

Pain UK

British Pain Society

Pain Concern

Primark adapted bras review

Primark have launched a range of adaptive clothing which I’ve found quite exciting. There’s a few items in the range that I want to buy but I can’t afford them all in one go. So to start with I’ve just bought what I needed most which was their adaptive bras and a set of pyjamas. Today I’ll review the bras I bought.

The adaptive clothing range is only available in a small selection of stores meaning you can’t go all stores to browse the range. It’s a little annoying but I understand that the adaptive clothing range is very niche so it doesn’t make financial sense. Added to that for click and collect for the clothes is only available to select stores so you might not be able to get ahold of the clothes close by to where you live. I don’t quite understand why not all stores can offer this? I feel lucky that my local store does click and collect but going to collect the clothes is rather an ordeal. 

I bought both the bralettes and the lace plunge bra which are the two bras that Primark offer in their adaptive clothing range.

Photos from Primark

Both bras are front closing and have a magnetic closurfor myself and my PAs/carers when getting dressed and o. My usual bras I have to pull over my head so as you can imagine having something front closing has been an absolute dream. The bra’s from Primark also have given me more independence when dressing and undressing as I just need a bit of guidance to get them on but apart from that I can pretty much put them on myself and the closure is so easy to do even on days when I’m struggling with my hand function. Also with my Ehlers-Danlos my joints are very unstable so pulling my bra over my head can sometimes cause problems. However the front closing bras cause no issue at all with my shoulders.

Both bras come in two colours. Either pink or black. I got one of each colour in the bralette’s and a black lace plunge bra as I had some underwear that would go with it. With the bralette’s it would be nice to see them in in other colours such as light grey and both bras’s in white in a nude skin tone colour. There’s adaptive underwear in the Primark range so I’d have have them in these other colours too so they can co-ordinate.

I absolutely love the bralette, the only things I don’t like about them are first and foremost they aren’t padded. I’d love to see Primark add padding to these bralettes. The other thing is with tighter fitting tops the middle part where the closure is it is quite prominent and can be seen. Even on lose fitting tops you can see the magnetic closure if the top is pulled a particular way.

The lace plunge bra however is padded. Both bras’s are not wired which I like. The bralette if padded would have been the style of bra I’d normally wear. The lace bra I see as more fancy but I like it because it’s padded. 

The only problem I find with the lace plunge bra is that the lace on the strap goes quite far up so it show on some of my tops.

Another thing I found was trying to work out the size I needed. The Primark website wasn’t very helpful but eventually I found something online and found that I was an XS - I’m a 6/8 for clothes.

So in summary:

• 

  Photo from Primark

  Not are stores stock the range or offer click and collect
• I would say that on the whole the magnetic closure is very good and easy to do
• The front closure makes taking the bra on and off a lot easier 
• The adaptive bras promote independence when dressing/undressing
• I’d like both bra styles to come in more colours
• The bralette’s aren’t padded but the lace plunge bra’s are
• I’d like to see the bralette’s with padding too
• I like that both bra styles don’t come with under wiring which I like
• The lace on the that particular bra goes quite far up showing on some tops
• The sizing chart isn’t very clear on what size you need to get

Disability services: Listening libraries (updated)

For some people with a chronic illness/disability audiobooks can be more accessible for a number of reasons.

There are a number of listening libraries available free of charge to those in the UK who need to access audiobooks whether it be because of a visual impairment or a print disability. There are also ones you can subscribe to. I have listed the main listening libraries we have in the UK.

So what is a ‘Print Disability’?

My Irlen’s glasses

A print disability covers a wide range of things. 

It could mean you struggle to read print because of a specific learning disability like dyslexia. You could have Irlens Syndrome (also known as Scotopic Sensitivity). Also you don’t have a visual impairment but you struggle to read standard size or written print. 

Print disabilities also cover cognitive difficulties with reading such as poor concentration, brain fog and conditions like brain injuries. 

They also cover physical difficulties with books too. For example struggling to hold a book or turn a page due to disabilities and conditions like having a Spinal Cord Injuries, MS, arthritis, M.E., MND, Parkinson’s and more.

I also feel that Print Disability’s should include difficulty reading, using and holding e-readers as well.

Listening Books

Listening Books is “an audiobook lending charity for those that find their illness, mental health, physical or learning disability affects their ability to read the printed word or hold a book.”

Their books can be accessed through their website or through the Libby audiobook library app.

Magazines and newspapers can also be accessed.

To qualify for Listening Books you must have a disability, illness, learning disability or mental health condition that impacts your ability to read or hold a book.

Membership costs £25 for the year. When you sign up there is a long list of medical conditions and you can select your conditions to be eligible to join. 

If there is a title Listening Books doesn’t have that you’d like to listen to you can contact them and if they can buy the book they will add it to the library. This is something that I have done before.

BorrowBox

BorrowBox is a library in one app, from it; from it audiobooks and eBooks can be borrowed.

It’s a free service some local libraries now use to allow members to access digital content. You can check with your local library to see if they’re using BorrowBox.

Link to BorrowBox: Find out if your local library is using this service.

RNIB Reading Services

RNIB Reading Services is open only to those who are blind, partially sighted or has a print or physical impairment that prevents them from reading standard print.

Their Reading Service is available in a number of different formats. There is a link between Amazon’s Alexa and RNIB’s talking books. They also offer books in braille and now a new service e-Braille. Books can also be loaned on Daisy CD’s and USB. They also have a library of books through the Dolphin EasyReader app audiobook library.

As well as books magazines and newspapers can also be accessed on audio.

Calibre Audio

Calibre Audio is a “a UK-based charity providing a audiobook lending service for people with a print disability.”

“Who can join… We support anyone unable to see, read, or comprehend printed text due to difficulty or inability. This can include:

• A specific learning difficulty such as dyslexia 
• A brain injury or cognitive impairment such as head trauma or stroke
• A visual impairment or blindness 
• Physical dexterity problems, such as Parkinson’s disease, arthritis, MND
• Learn more on who can join
  

For those over 25 the fee is £3 a month or £30 for the year. For those using the USB stick service for books or those under 25 the service is free.

Calibre Audio uses to Dolphin EasyReader app or the Libby app, streaming through their website, USB stick, and through the Synapptic software used by those with visual impairments. 

Link to Calibre Audio

Audible

This is a well known listening library. I often find Audible has titles other listening libraries don’t have and some audiobooks are exclusive to Audible.

There are different subscription levels each with different benefits. You can pay monthly or yearly. Often there are offers to get Audible for free or at a reduced rate. You can also buy more credits to buy books. Sometimes there are 2 for 1 offers too, so you can on selected titles get two books for one credit.

Link to Audible

Kindle Unlimited

You don’t need a Kindle to access Kindle Unlimited. You can download the free Kindle app onto your phone or table too (both Apple Store and Android). Kindle Unlimited offers unlimited access to a wide range of ebooks, with quite a wide selection that come with audio which you can listen to via Audible without paying for Audible. You can choose to do a mixture of reading and listening or you can purely listen to the book if you wish.

You do have to pay for Kindle Unlimited but there are often offers such as free trials of the service.

Link to Amazon Unlimited: if you sign in you can view what offers they have available which may include a free trial.

Everand

This listening library has now changed since the last time I used it. It now operates similar to Audible with different levels of membership all at different fees and each with different benefits. I do think this is a bit of a shame as before you just paid one subscription fee and it gave you access to unlimited audiobooks and ebooks. There is however an offer for 30 days free subscription if you wanted to take advantage of Everand for 30 and listen to what they have on offer for that free month.

Link to Everand

Polite Notice

I have made it clear who is eligible for certain listening libraries. Please only sign up if you meet the eligibility criteria for that service; not just because you want to access free audiobooks. By kindly following this criteria you allow that charity to provide a service free of charge and grow their service to those they provide for.

Thank you.

M.E. and my Genetics - Decode ME Study results

Back in October 2023 I wrote a post about the Decode ME Study. It surveyed people with a diagnosis of M.E./CFS and then from there individuals like myself were selected and asked to donate a DNA sample to contribute to the overall study. 

The aim was to see if M.E. had any genetic links which, with further studies and research could find more effective ways to understand, diagnose and treat M.E. in a more scientific and medicalised way. Currently M.E. is diagnosed based on the symptoms reported meaning other conditions could be missed or a person may be misdiagnosed. Also because of the distinct lack of funding into research in M.E. (The Decode M.E. Study is the biggest of it’s kind), M.E. is poorly understood in terms of how it affects individuals and why we experience the symptoms that we do. This means there is no clear way on how to treat M.E. and clinicians especially those who don’t specialise in treating M.E. like GP’s have no clear way on how best to care for a patient with M.E. Plus with symptoms currently only being self-reported it’s difficult for GP’s when it comes to issues such as prescribing medications. GP’s are also most likely to be the primary doctor for a person with M.E. as getting into specialist M.E. services can be difficult.

Well, the Decode M.E. results are in and the main findings really surprised me but also gave me hope and also me me feel heard and believed. I wanted to take them running to my GP and other doctors and a say ‘see its real I’m not making it up’ especially to try and stay on some of my medications that help me manage the severity of my symptoms.

The results of Decode M.E.

So firstly which surprised me the most my genes contribute to my chances of developing M.E.! - So like the the infection (we’ll come to that part) - for many people like myself an infection triggered their M.E. - this then turned on that genetic switch inside me and caused me to develop M.E. (That’s how I picture genetic contributions).

Those with a diagnoses of M.E. have significant differences in their DNA compared to the general population. 

Eight genetic signals have been identified. As our DNA doesn’t change the onset of a person’s M.E. reflect causes rather than effect of M.E.

The signals discovered are involved in the immune and nervous systems indicating immunological and neurological causes.  - For me my M.E.has always presented as neuro-immune with its symptoms like how my immune system falls apart when I’m exhausted along with wide ranging multi systemic symptoms as well.

At least two of the signals found relate to the body’s response to fight off infection. - Like I mentioned above M.E. for many is caused by an infection, often viral. For me it was the flu which lead to a bad chest infection. I also find that I find it harder to recover from illnesses. During the pandemic I was so scared because of this too.

Other signals found point towards the nervous system. One of which researchers previously had found that in people experiencing chronic pain which reinforces neurological contributions to M.E. - For me this validates my pain. When doctors don’t understand why I’m in pain and want to reduce my medication I want to wave this at them and say ‘My M.E. is genetic and it has signals to my nervous system which is why my whole body is in pain and I feel different types of pain. See it’s real it’s not all in my head! Please don’t leave me in pain!’

The signals found align with how people with M.E described their illness.

Source: Action for M.E - For more on the results of Decode ME click here to go to the study’s website.

 

My trial of Loop Wheels

Out with my Loop Wheels

I recently did a trial of some Loop Wheels. 

One thing I regret I not taking any photos while I had them for you to see them better in this review and just for me to look back on. 

I tried the Loop Wheels Urban and I was offered to extend my trial and try the LT wheels instead but I turned the offer down as I didn’t see the benefit at the time. (My reasons why below in this review).

What is really good of Loop Wheels is to UK customers they offer a free trial of the wheels. You get about 2 weeks use of the wheels and all you have to pay for is the delivery which is £35.

I initially went for the Urban wheels as I was guided to them on the ‘Help me choose’ feature of the website as I was going to be using my Loop Wheels with my Batec. That was the whole reason why I was interested in Loop Wheels. They’re a suspension wheel and I thought they’d really benefit me when riding my Batec so I’m being jolted around less which would offer me more comfort and relive my pain especially when going up and down curbs and difficult paths and tactical paving etc. However I personally found that I didn’t get the high suspension relief that I was expecting. I felt some suspension but not much difference to what I get with my Spinergy wheels.

The pink in the photo on the Loop Wheels is my old push rim covers that I put on them as I find the small standard push rims difficult so it was handy that I still had them. Loop Wheels do offer a variety of push rims including the CarboLife push rims with and without Gekko grip. I have the CarboLife L Gekko grip push rims on my GTM chair that I’d highly recommend if you’re going to buy Loop Wheels for every day use.

When I contacted Loop Wheels about the lack of suspension they were really helpful and I explained I used their feature to tell me what Loop Wheels I needed. They explained that for my weight I’d need the LT wheels instead and they can also be used with power add-ons. They did apologise that this wasn’t made clear and the lady explained I’d need the light suspension.

The reason I didn’t try the LT wheels was because I found the Urban wheels quite heavy and the LT wheels were only slightly lighter in weight. I struggled and needed my PA to help me put the Loop Wheels onto my chair every time I wanted to go out on my Batec as my everyday wheels are my Spinergy wheels. I’d still need help with the LT wheels as they still weighed quite a bit. So changing the wheels just for Batec rides was quite a faff. Plus the suspension on the LT Loop Wheels was only slightly more than the Urban wheels. Part of me now though wishes I had gone and tried the LT wheels just to see and try out the suspension but I know that I can always in the future do the £35 trial if I do decide I want to try them out.

I personally felt that the cost of getting the LT Loop Wheels was quite an expense especially considering I was only going to be using them for Batec rides. With a lot of thought I decided to leave the idea of getting Loop Wheels for now and use the money on other things.

In summary:

Pros & Cons

Pros

• Loop Wheels do look amazing
• The trial of the Loop Wheels is a great way to help you decide if they’re for you or not including what wheels are for you (as I found for myself)
• There is a verity of push rim and colour options (alongside the black)
• They have a very of wheels to suite your needs
• The staff are friendly and helpful when you call or email them (I called twice as well as emailed them and the staff were helpful and knowledgeable and eager to help)
• I didn’t feel like it was a push for a sale; they more wanted to let me try out the wheels to get an idea of which ones were best for me.

Cons:

• They are quite expensive wheels - think about if these will be your  everyday wheels or just for riding with a power add-on
• The push rims and coloured Loop Wheels come at additional costs, so consider how much they will cost you in total with all the options you want
• The wheels weigh quite a lot more, especially compared to my lightweight Spinergy wheels 
• I found it difficult to change the wheels partly because of the weight and also as the Loop Wheels didn’t have an axel pin
• I found little suspension given to me in the Urban wheels - not what I was expecting from what I’d heard about these high suspension Loop Wheels
• The standard push rims aren’t that great (hence me putting on my old push rim covers)
• To switch my every day wheels to Loop Wheels plus add the CarboLife L push rims and Gekko grip would be very costly. 
• I felt quite disappointed with the Loop Wheels in all honestly 

Making reading accessible

For me I love books but having both dyslexia and Irlens (also called Scotopic Sensitivity) reading can be a challenge.

There are many ways I’ve now made reading accessible to allow me to enjoy books. Here are the main things that have made reading and accessing books easier for me:

1. Audiobooks 

My current book

I used to love books and reading and then when I fell ill in 2013 I began to struggle to read and then I just stopped reading. Discovering audiobooks  opened up the world of books again to me and I fell back in love with them. To me listening to a book is still “reading’ just in a different way that is more accessible for some people.

At first I had a volunteer from my local library bring me audiobooks on CD but I found my library lacked audiobooks for young adults. Now my local library uses a free listening library app. I also used to get CD’s from RNIB before they moved over to using a listening library too.

Having dyslexia and Irlens also makes reading difficult for me and audiobooks is my way around that to make reading more accessible. Plus having a ‘print disability’ it gave me access to some free listening libraries so I could access listening libraries for free.

Earlier in the year in my Disability Services series I wrote about what a print disability is and about the free listening libraries there are that people in the UK may be able to access.

2. My Kindle

How I read on my Kindle

Ever since I got my Kindle I’ve found is so much more easier to read books. Before I struggled with the small text, often using the magnifier on my iPhone as was as using my overlays. So you can imagine the difficulty reading a book!

My Kindle is so lightweight in my lap compared to a book and pressing the screen to turn the page is so much easier. It can be difficult to hold though at times so I mount my Kindle onto my Flexzi stand that is attached to my bed so I can read more easily along with my reading accessible gadget, (more below).

I love that on my Kindle I’ve been able to make the text settings just right for me to make reading accessible. I’ve chosen a font I find easy to read, I’ve made it quite bold too. I’ve also spread out the line spacing and the spacing between paragraphs. I even sometimes enlarge the text when I’m struggling but still want to read. There are other settings too that collectively have truly made reading accessible for me.

Another feature on the Kindle that makes reading accessible for me with my dyslexia is being able to press on a word and get its dictionary definition.

3. My page turner remote

To go with my Kindle I bought this little gadget. It’s a remote control to turn the page on my Kindle. 

The two parts pair together. One part clips to the screen of my Kindle and then there is the remote control. It’s a nice size and the button is big.

The only downside is there is no button to go back a page but when looking for this device I couldn’t find a device with this feature. I do like that this one is white as opposed to black.

It’s definitely has made reading more accessible for me.

I especially use it when I’m having to be reclined or laid flat in bed. It means I can read in this position in bed. I attach my Kindle to my Flexzi stand on my bed. It means I can position my Kindle comfortably and then turn the page with the remote comfortably, easily and accessibly read.

4. My Flexzi stand

My Flexzi stand* attaches to the bar on my bed. It can also be clamped onto other bars like my wheelchair or flat surfaces like a table. I love that it’s pink too. Lots of things can be mounted on it, my iPad, mobile phone and now my Kindle. All I’ve had to do is put a Velcro patch on the back of my Kindle case.

It really helps makes reading accessible as when I mount my Kindle onto it I can read hands-free when holding my Kindle is difficult. I can also then use my page turner remote too to make reading easier so I don’t have to press the page myself depending on what position I’m sat in. 

It also helps when I’m having to lay in bed reclined, tilted, or laid flat as I can position my Flexzi in a way that is comfortable for reading and it enables me to read my Kindle with ease.

*link to a review of it here

5. My Irlens glasses 

I have Irlens, also known as Scotopic Sensitivity. The colour for people with Irlens varies from person-to-person. For me it’s a blue-purple colour. I’ve used overlays but I find them very cumbersome especially as I have to use a combination of two overlays so now I’ve just received my glasss I find them much easier. I also find glasses more universal such as for working on my iPad and for looking at might Kindle as well as for reading. 

I find having Irlens glasses makes reading accessible as I can use them to read my Kindle where I’ve altered the text to make reading easier and accessible. Plus looking through my Irlens glassess means the text doesn’t move around on the page as this is what it is like to have Irlens.

My Irlens glasses 

* Read about Irlens here

(My glasses look more blue as the dark blue was the dominant colour so you can’t tell that there is two purple shades in them as well.)

6. Overlays and reading rulers

These act as an alternative to my Irlens glasses and both act slightly differently.

The overlays colour the page for me making reading the page easier for me.The overlays I have at the moment are two lilac ones.

My reading ruler I have in blue as I couldn’t get a purple one. My reading ruler helps make reading accessible for me as it helps me read text line-by-line.

 

7. Headphones

The final thing that I find makes reading accessible to me is my different headphones.

The first from the top photo is my headband headphones. I found out about these from a YouTube video by Hannah Hodgson (who does great book reviews and she’s helped me find some great reads). Anyway back to my headband. I find these great when I’m wanting or needing to lay on my side in bed and my usual headphones I can’t wear. They have small ear pieces either side which are small and comfortable. You on the front of the headband is a play/pause button and also volume up and down buttons. The headband is paired with my phone via Bluetooth so I can play/pause and alter the volume on my phone to the headband too.

The second thing photographed below is very similar but it’s an eye mask with headphones inside. I do find this one more cushioned and obviously more comfortable for sleep. It has the same controls and as with the headband is connected via Bluetooth so can be controlled on my phone too. I obviously use this one more for listening to books at night or for resting during the day or bad M.E. days when I’m struggling to tolerate the light.

Next are my noise cancelling headphones and AirPods.

I like my Apple AirPods as they connect really well to my iPhone and iPad. The noise cancellation is also great and I like the feature where if I talk it automatically picks it up and pauses until I’ve stopped talking. They’re also nice and portable to take them anywhere with me so I can access audiobooks on the go making them accessible to me.

Sometimes I don’t always like something in my ears so I like my headphones as an alternative. I really do find head phones make reading, i.e. audiobooks accessible to me. I find having something over my ears comforting and I find the noise cancellation blocking out the background noise really helps with my anxiety. I find they also help me too with my brain fog to be able to concentrate on my book more, making my audiobooks more accessible to me.

I have two pairs of headphones so I always have a pair available to me. My lilac ones especially fold down flat so I can easily put them into my rucksack when I’m going out. I wear my headphones around my bungalow and when laid in bed too so I can listen to my audiobooks.

Disability Pride Month

Throughout the month of July Disablity Pride Month is celebrated. Unfortunately it doesn’t get the same coverage as the LGBTQ+ Pride Month; very few organisations change their logo to the Disability Pride flag and their isn’t the same sold merch. 

Disability Pride aims to celebrate the identities, achievements, and culture among the disabled community. There is also more of a push to promote inclusion and accessibility and well as reducing ablism and disability hate crime. Disability Pride Month came about in commemoration of the signing of  the Americans With Disabilities Act (ADA) which was passed on July 26th 1990.

So what does Disability Pride mean to me?

Disability Pride Month means a lot to me to as it allows me to celebrate my disability identity. It took me a while to identify as ‘disabled’. Initially I just saw myself as chronically ill then as time went on and understood the definition of what ‘disabled’ meant I began to relate to the idea that I was also disabled. Slowly more and more I referred to myself as being disabled and having disabilities. 

I’m not only dis-abled by my illnesses but I’m also dis-abled in society too. Such as lack of wheelchair access, cafés not providing allergy friendly food and drink options, places not having an accessible bathroom or Changing Places, no closed captions, plus the expense of being disabled, and difficulty getting access to specialist services in the NHS, poor care from care agencies are all dis-abling things (and more) I face multiple time a day.

This is why Disability Pride is important to me as it brings the disabled community together and we can highlight the issues we are facing. It means a lot to see disability being celebrated and I’d love to take part in some of the events to show able bodied people that disability comes in all forms and that we are proud to be disabled. Plus that we won’t tolerate the ableism, hate crime, lack of access, lack of inclusion and representation etc. I do wish there was more coverage of Disability Pride both on and off line as well as for there to be more events as well as Disability Pride parades in the UK. 

As part of Disability Pride some of the topics I feel need addressing are:

I wish topics like ablism were addressed more including what ablism actually is so people are more aware so incidents of ablism is reduced. Included in this is disability hate crime.

I also wish there was more of a push to improve accessibility into buildings, or at counters, or self-service checkouts as well as better accessibility on websites, autism screening times for adults at cinemas, more signed programs at normal times of the day, more ramps and push button doors and voice activated devices like being able to voice control my kindle. Sometimes I feel like accessibility is a forgotten thought. Or another example may be a shop might get a ramp because they have to but it’s not the right type of ramp for the actual user. (I actually personally have experienced this). Accessible holidays to be the same price and currently when booking somewhere accessible often the price of the holiday increases. And so so so much more that I could add! Included in this I’d like to see more accessible toilets and Changing Places be fitted with RADAR Key access. This means that only holders of RADAR Keys can access the facility and it will prevent accessible toilets having baby change facilities. As well as this it will reduce the misuse of these facilities. I’d also like to see signs saying ‘not all disabilities are visible’ on these facilities doors to help those with invisible needs feels able to use the facility and to not be judged for using the facility. People such as those with stomas, urostomy’s, catheters or conditions like Crohn’s or IBS or maybe someone who needs assistance from a carer when using the bathroom. I’d also like to see more Changing Place facilities too, especially ones with washing facilities and height adjustable sinks.

I’d also like to see more of a push to have more domestic violence refugees and services being made available and accessible to disabled and D/deaf women (and men). A 2025 Sky News report found that less than 1% of refugees were accessible for women who are wheelchair users. An older BBC Investigation in 2018 found around 11% of refugees were accessible so this may include accommodation for other disabilities.

As part of Disability Pride Month I’d also like to see more representation of disability on television. They manage for the Paralympics, so why can’t we have more D/deaf ot limb difference or wheelchair user presenters on television or playing parts not focused on their disability in TV dramas like a wheelchair user detective (I saw one on 24 Hours In Police Custody so they do exist) or even a female D/deaf Doctor Who?!

Not-so-happy Disability Pride Month

Currently in the UK our government wants more disabled people in work. The government are currently in the process of reducing ESA And the UC health element benefits in a bid to try and get more people who are currently out of work back into work. However many workplaces lack the access for a wide range of disabilities, even for those going for an interview. Plus there are few jobs that at flexible working especially from home which is what a lot of disabled people need. On top of that the support scheme to help disabled people in work call ‘Access To Work’ that provides equipment, software, support workers etc. is drastically being cut and taken away from those who need putting them in difficulty to be able to continue working. There is also a long waiting list to be assessed for Access To Work too and there is no guarantee you’ll get the support you need. (Disability Rights UK). More needs to be done to enable disabled people to work in a way that suites them and to have their access and support needs met. 

For those too unwell to work I personally feel the government should be fairly supporting them and not dismissed and be treated unfairly. Disability is the only minority anyone can join at any point. With the current changes our government have made if someone were to become disabled and unable to work in the next few months they will receive far less to live off financially in the UC health element payments compared to current claimants.

My article on Scope writing about what the cost of cuts could mean for me.

As well as this PIP, Personal Independence Payments, which is a non means teasted allowance to help disabled people cover the extra costs they incur. - See my post on some of my extra costs (and it’s grown since then as I’ve bought a £5,000 Batec and a £4,000 wheelchair. However there is a shortfall in in amount disabled households receive and the amount disabled households need. A household with at least one disabled chile or adult with need around £1,095 to live the same standard of living as a non-disabled household and that figure is set to rise. Yet the average amount of PIP a person receives is only £465 so there is a massive shortfall. (Scope: Disability Price Tag Report 2025). The government also are also going to make it harder for new claimants to PIP to be eligible for PIP especially when it comes to the daily living component. (There are two components to PIP: daily living and mobility.)

These changes passed by the UK government came into effect on the 9 July so a Not-So-Happy Disability Pride Month for disabled people in the UK.

Personally it feels harsh as our current government used to stand for the vulnerable and working and lower-class in society. I personally hoped a change in political leadership would be good and much needed for the non-10% in society. The government wanted to make these changes to saves billions and they felt too many people were on sickness benefits. (Well we have just had a global pandemic of course more people will be sick after that). However Liz Kendall, The Secretary of State for Work and Pensions felt people were ‘taking the mickey’ in her words when it came to sickness benefits (you should look at her wage, her husband’s wage, the house the own and then the expenses she claims out of tax payers money - that’s taking the mickey in my opinion). Anyway I feel that there were other ways the government could have saved a few billion pounds, like reducing MP’s wages, reducing the amount they can claim on expenses or stopping this entirely, taxing the well off in society more, going after large corporations that don’t pay their taxes, tacking the crisis we have with people coming here on boats, the about we spend in the Foreign Ministry on other countries sorting them out when our own country is a mess. (When I read Rory Stewart’s book I was shocked at how much the Foreign Ministry spend.) This is all my own opinion of course but I just feel that the government could have chose to do a lot more than target the disabled who are the most vulnerable and most likely to live in poverty (Disability Rights UK).