Cerebral Palsy

Rosie Jones Triple Threat Review

On the 15th of September, 2023, I attended Rosie Jones’s first UK comedy tour at the Redditch Palace Theatre, which is, funnily enough, located in Redditch. Calling herself a “Triple Threat”, which is also the show’s title, Rosie explains the reason for this description is that she is “A lesbian, disabled and a prick.” This line is delivered with comedy, as is to be expected, but also with a self-satisfied grin that says she knows she has already shocked some people in the audience.

Rosie-Jones-laughing

Ableist slurs!

Throughout the show, she uses ableist slurs to significant comedic effect. This surprised me as I thought it would annoy me rather than amuse me because I disagreed with her use of the now-famous R-word in her latest Channel 4 documentary.

Rosie-Jones-looking-thoughtful

Unlike that instance, which I’m convinced was used to gain attention and generate intelligent and not-so-intelligent debate, these words were funny, thought-provoking and a not-so-subtle metaphorical finger to anyone who has flung these words at her in public. She’s proud of being gay, she makes a living from being disabled, and she’s so proud of being a prick she’s had it printed on her merchandise!

Rosie on the property ladder

Alongside those points, she talked the audience through her first flat purchase, explaining that she’d finally found a use for her dad. The experience also taught her that the age of a boiler is essential to know when you’re a successful comedian taking your first steps on the property ladder. Rosie also talked at great length about her struggles to become a national treasure, her hatred of Putin and how we would all, at some point, not understand a word of what she was saying.

This was the only point where you could see sadness from the otherwise joyful Rosie. As a disabled person and a person with Cerebral Palsy, I related to what she was saying and could identify with her moment of pain. Some people will only see difference, no matter what is achieved in life.

Rosie-Jones-and-I


Lived Experience

Many people identify with Rosie’s comedy, and while you don’t have to be gay or disabled to appreciate her comedy, I wonder whether the non-disabled person without a connection to either group would be entertained. Shared lived experience is what got the biggest laughs out of me. I’m sure, given time, Rosie will achieve the ‘national treasure’ status she’s openly aiming for.

Your thoughts?

Have you seen Rosie’s new show? I’d love to hear your thoughts.

What I’ve learnt from my journey to independent living

Most people want to be independent, to have freedom and be able to make their own decisions, enabling them to live the life they want. But, being disabled can make gaining independence tricker, as Lucy Currier, who has cerebral palsy, has discovered. Here, she shares her tips and learnings from her ongoing journey to independence to help you gain your own. 

Hi, my name is Lucy and I was born with spastic quadriplegia cerebral palsy. Cerebral palsy is a neurological condition caused by a lack of oxygen to the brain.

Depending on which areas of the brain are affected, the condition can be so mild that it may not be visible, or so extreme that a person cannot move at all or has learning difficulties.

In my case, the area of my brain that controls movement was affected, meaning that I’m reliant on an electric/powered wheelchair to be mobile. I also require care support as I need assistance with personal care and all daily living tasks.

Lucy Currier outside in a sunhat

Moving out from our family home

I currently live two days a week in a flat of my own and the rest of the time with my family in Birmingham, a city that I have called home for all of my life.

I am the oldest of three siblings. At my parents’ house, it’s just me, my brother and our fourteen-year-old dog as my sister moved out a couple of years ago.

I was very lucky that my family were able to buy me a property when the council had no suitable options. I wanted to have a two-bedroom place so that my PA would have somewhere to sleep – not an uncommon or unreasonable ask. But the council refused to see a need for a second bedroom.

But the accommodation wasn’t all that I needed to consider. Leaving home when you’re reliant on others for assistance can be challenging and costly. So, I am only able to stay at my flat twice a week while I wait for more budget to pay staff full-time.

While I’m still not totally where I want to be, I have already learnt a lot along the way that I hope will make someone else’s journey a little bit easier.

Hurdles to being independent

For the majority of people, being able to afford somewhere to live is difficult enough. But, for me and many others like me, we face the additional question of how we’re going to find and afford to pay personal assistants as well? For me, the answer was Direct Payments.

Lucy Currier in her wheelchair in the woods

Direct Payments – be vocal and keep records

A Direct Payment is a sum of money given to an individual to pay the cost of employing personal assistants/carers to meet their needs. In order to get this, you first have to go through a painstakingly-detailed assessment, which I am sure many readers will have experienced for themselves.

I had my first proper assessment two years ago, which enabled me to move out part-time. But am now asking for a reassessment as I need more funds to have PA cover for a full week.

I have found this process extremely hard as it can sometimes feel like no one is listening. One thing I have learnt from all my triumphs and trials with Direct Payments is that you have to speak up!

To help tackle this, earlier in the year I attended a Direct Payments Conference, where I got to speak to some of the key people running Birmingham social services. Making yourself heard, in any way you can, is vital. I’m hopeful that my next assessment will now be more positive.

The second most important thing is getting everything in writing. A written record is your friend. I spent three months phoning social services every day asking for a social worker. But I have nothing to prove that I did this. However, if I had emailed daily, I would.

The more information you have the better. At the conference, I was able to provide dates of when I requested certain information through notes I’d kept. Without this, I doubt I would’ve been taken as seriously as I was.

Fight for what you need to live independently

Looking back, I have a habit of believing what people tell me when they are in an official role. This has, time and time again, stopped me from living my life the way I want to.

For example, when I left mainstream school I wanted to go to university. But I didn’t because I believed that having PA/care support away from home would be too restricting.

The disability officer at my prospective university offered to provide me with all the educational tools I needed. But when it came to personal care, I would have to specify the times I required assistance.

This caused me a great deal of anxiety, so instead of researching and fighting for the flexibility I needed, I stayed at home and completed a degree with The Open University.

I’m proud of this achievement – I got a 2:1 in health and social care and mental health subjects – but I wish I’d fought to live my life my way.

With finding accessible accommodation, I waited far too long on the word of the social services officer who said they could find me somewhere suitable. In the end, I had to take matters into my own hands.

Lucy in a supermarket with a shopping basket on her wheelchair

Find the right PA for you

Finding the right PA/s for you can be difficult. I’d ideally like more assistance with recruiting the right staff on the budget I have. But, so far, I have already learnt a lot.

The PA I have now is lovely, but I have had people apply who would want to control how I spend my day. At times, I have thought that I should be grateful for whatever help they give me.

It’s always nice to be thankful for the assistance you receive, but don’t be grateful to the point of putting your own wishes to one side.

I was once called ungrateful by a PA when I refused to eat the raw sausage she put in front of me. I felt guilty at the time. But it was only later when talking with family, seeing how shocked they were, that I realised how introverted I had become.

I’m a member of several disability groups and we seem to live in a society in which the care profession thinks we should gratefully receive whatever help we get, however inadequate.

Never settle for anything less than what makes you comfortable.

Hiring a carer/PA – top tips

To ensure I have a good working relationship with my PAs, here’s what I now do:

  • I write my own support plan so that people know what to expect. If there is any aspect of my support they are not happy with then it is not the job for them. I always send it out with my job application forms so that they know upfront.
  • Be polite but firm and clear. I now avoid some phrases, such as “I’m sorry but” or “when you have a minute…” because some people will take advantage and not do what’s been asked.
  • I now have a folder that lists all the main tasks that need completing each day and my general preferences.
  • I make sure that my payroll company has the contract of employment finalised and signed BEFORE anyone starts work. It takes longer this way, but it means both myself and my PA are protected. Likewise with DBS checks.

Some people reading the above list will be horrified that these things weren’t done from the beginning. But the reality of my situation is that there was no one to tell me these things.

I believe that the system needs to change so that everyone new to employing support workers/carers/PAs, whatever name you prefer, knows the basics. I’m still learning and progressing, but that’s true of everyone.

By Lucy Currier

To read more from Lucy, visit her blog, Inclusive Living Concepts.

More on Disability Horizons

My Suspected Coronavirus Experience

This took longer to write than I thought it would. I wanted to post it on inclusivelivingconcepts, in addition to it being published to give my readers could have a chance to ask me questions. The idea was proposed to me by Disability Horizons magazine, I hope people find it interesting. It was pointed out to me when I submitted this to the magazine that I never actually received a positive diagnosis of Coronavirus. There was no access to testing as it was not widely available then. I’ll never know for sure.

Contracting Coronavirus

I live with my parents and brother. Back in April, I believe we all caught Covid-19, but our experiences of being ill were different.

Thankfully, none of us had it seriously enough to need hospital attention, but the road to recovery has been slow, particularly for me.

I don’t think my disability makes me no more vulnerable to the virus than an able-bodied person. I’m probably as fit as any other 34-year-old who doesn’t exercise regularly.

Having watched my brother and mother become ill first, I knew it was only a matter of time before I caught it, as my parents are my main caregivers at the moment.

My brother’s and parents’ symptoms

My brother and dad had what can only be described as ‘typical’ symptoms of Coronavirus – a high temperature and cough. How they felt matched closely with what we were being told in the news, so we assumed they had the virus.

At the time, tests weren’t even widely available for NHS staff, so there was little chance of us being able to get tested. I would like to get an anti-body test once they become available to be sure that’s what we had. But I’m pretty convinced as it is.

Coronavirus recovery time

The quickest to recover was my brother, who felt ill for about three weeks. Friends with family members who have had confirmed Coronavirus tests have said they experienced a horrible week, perhaps ten days.

For me, it was two months from catching the virus before I started feeling close to normal again.

Back in April, the information available about how long we might all be ill suggested that we should’ve begun feeling normal towards the end of my second week. As time went on, more details came out, and the recovery seemed to vary. One article I read described someone having what he called prolonged COVID-19. They were ill for three months.

Pain

My first symptom of possible Coronavirus was pain. I assumed it would be sweating because there was so much talk of a high temperature.

It initially made me question whether I actually had the virus. The symptoms of my brother and dad had seemed so like Coronavirus. Surely it couldn’t have been anything else? 

I had what I can only assume was nerve pain. I say this because every muscle and joint in my body ached to the point where I couldn’t cope with sitting up as my hip joints were the worst. It was unbearable.

Painkillers didn’t touch it, but there would be random moments where suddenly all pain and discomfort would disappear, only to reappear again sometime later.

Temperature and cough

I didn’t really have a temperature, as has been talked about so much. I woke up sweating a few times in the night, but my temperature was stable.

A feeling of being generally off-balance and cold was my experience which wasn’t fun. I also didn’t have any breathing difficulties or indeed a cough.

Confusion and rambling

Being confused and disorientated is not something I have experienced before, so this was new territory.

One second I would be convinced I had to do something, but the next I couldn’t remember what it was at all.

I tend to ramble anyway – why use one word when you can use Ten? When I was ill my ramblings made less sense than usual!

I was also aware that I wasn’t thinking as fast or as clearly as I normally do. Thankfully, I now feel like myself again now.

Tiredness

Together with the other symptoms, I didn’t know what was going on half the time, and despite sleeping a lot, I was constantly exhausted.

I have so much sympathy for people who suffer from fatigue after experiencing what I did.

I’d be sitting or lying down, either watching TV or listening to an audiobook, when my body and brain would suddenly want to sleep. Even worse, if I didn’t get my head down straight away, I would go dizzy and experience headaches.

The tiredness lasted the longest, about 15 weeks in total. Even when all the other symptoms had disappeared, I couldn’t actually concentrate on reading or doing anything without needing to go to bed soon after. I couldn’t look at my phone or laptop without getting an instant headache.

Lack of taste and smell

Not being able to taste or smell anything is now a recognised symptom of Coronavirus, but it wasn’t at the time my family was ill, so that threw another curveball.

For me, the virus caused the weirdest sensation. It wasn’t like when you have a cold, and you can’t taste anything or only taste the catarrh in your throat.

Everything tasted like dust. There was no texture to food either. Everything I put in my mouth could have been the same food.

I suppose at least it didn’t taste horrible, but trying to eat with no sensory feedback was hard. The lack of smell was easier to cope with as I’d experienced that before. It was also weird when these senses suddenly came back. I was actually overwhelmed for the first two or three days afterwards as everything was suddenly different.

Nausea

This was the worst symptom. I suffer from nausea anyway, but the virus took it to a new level. Nothing relieved the nausea in any way until I recovered!

As mentioned earlier, I had no breathing difficulties, and I didn’t really have a cough. But I do believe that this virus, assuming it was Coronavirus, attacked my digestive system.

I felt like somebody had turned me inside out. If I didn’t eat, I felt ill, and if I eat more than a few mouthfuls, I was sick. It was a delicate balance that I’d mostly figured out by the beginning of week two.

The rest of my family stopped eating altogether for around two days and then felt better. My nausea lasted about six weeks.

I’ll probably never know if my theory is correct, but it was disconcerting to have an atypical experience when the news and NHS were discussing what to expect every day. My mum’s symptoms also echoed mine more closely, so it wasn’t just me.

I hope reading this has been interesting and useful in some way. I’m so grateful that none of my family had to go to the hospital.

With the lockdown relaxing, I just hope people will be sensible so that everyone can get back to ‘normal’ and leave their homes without worrying about catching this awful virus.

I’ve been very lucky, but I never want to feel like that again. Stay safe, Everyone.

My next post will be about the importance of choice and control and how I’m still having to fight to achieve this! So much in fact that I’ve started a new Twitter hashtag, #DirectPaymentHeadache. If you or someone you know is having issues with the support you receive, DP or not, please get in touch. Together we can effect change for a more inclusive world. 🙂

Cerebral Palsy

Cerebral Palsy and me

In this category. I will write about my experiences, sharing what living with the disability known as Cerebral Palsy is like for me.

What is Cerebral Palsy?

Cerebral Palsy is a neurological condition where parts of the brain don’t develop properly. It can be caused by infection or abnormal brain development. In my case, I was born three months early so the part of my brain that controls movement never developed properly. The reason for my premature birth was never discovered.

How does your disability affect you?

My disability affects my arms and legs which means I have poor dexterity and I cannot stand or walk unaided. My need for equipment to assist me in life is a must as is my need for care support. I have to access services to get this assistance. As a result, my opinions have become well-formed over the years!

I rely on my wheelchair to move around and grab bars to transfer. In order to be able to transfer all of my equipment needs to be at the correct height and in the right place. Because of this, I have a wet room with grab bars surrounding the toilet, a shower chair, a slide sheet to assist me to transfer in and out of my shower chair, a custom-made manual wheelchair and a profiling bed.

Without the above products, which I will review, I would be reliant on a hoist, as many people with a disability do! While there is nothing wrong with this, hoists are large and therefore take up space. It is also healthier for me to use my muscles and move my body as much as possible.

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