Happy Easter! This is a time that traditionally marks new beginnings, and for my mother and I that’s certainly true this season.
After a difficult year in which Mum’s care needs increased and my income was slashed, I’ve now left my job as a support worker to focus more on her and myself. I’ve also entered a new freelance zero-hours contract to generate a little bit of income on the side, so I’m not out of work entirely and can still gain some useful experience. But ultimately I can be much more flexible with my time now, to focus on what matters most.
So, following on from my post in January about how things were going at the start of the year, here’s a fresh update on how we’re starting a new chapter in our lives.
Contents
Support Work Resignation
At the end of March I left my support worker role with Emily Davison. It’s been a good 3 years, and I’m proud that I’ve been able to help her get started on a career she’s long dreamed of and deserved. I’m also very grateful to her for throwing me that lifeline after I was made redundant from my previous job. But it was no longer viable for me to continue, and as much as I hate to let her down when the DWP have made her situation so difficult, it’s clearly time to move on.
I’ve mainly quit because it had become conflicting and tiring to support both Emily and Mum at the same time, now that my mother’s needs have had to take precedence. It was common for Mum to call for help while I was assisting Emily with time-critical stories that she needed to publish, and in general my mental health wasn’t in a great state because of the decline Mum was going through, which made it hard to focus on my support work as well.
However, I also had to leave because of the way the DWP have treated me in terms of decimating my working hours and income, paying me for just 8 hours instead of 37 and cutting my salary by nearly £500 per week. They made no direct contact with me whatsoever to inform me of the decision (I had to learn about it via a distressed Emily) or to offer any sort of apology, explanation or support. They’ve just left me to deal with it, as though I’m disposable and unimportant.
Even without that I was considering leaving anyway, given Mum’s care needs as mentioned above. But the DWP’s actions cemented my decision, and even if Mum didn’t need extra help, I think I would still be quitting in these circumstances.
There continue to be reports of funding cuts for many other disabled people as well. Apart from Emily’s case, other recent examples include:
- Adolescence writer Jack Thorne slams ‘savagery’ of government cuts to Access To Work payments
- ‘I’m disabled – the DWP cut my work support funding by £50,000 with 17 days’ notice’
- ‘My support worker hasn’t been paid for weeks after delays to disability scheme’
- ‘I created a successful business thanks to a disability grant – but cuts will sink it’
In addition, other people have been sharing similar experiences on social media, there are awareness campaigns being run by the RNIB and the Access To Work Collective among others, and the Public Accounts Committee are conducting an enquiry, for which oral evidence was heard on 12 March (where the DWP admitted that there’s been a change in how policies are applied).
Yet despite all that, and knowing full well the detrimental impact they’re having on so many people, the DWP have even had the nerve to pay a prominent influencer to do an advert raving about how great Access To Work and support workers are. And sure, when the system works, that’s very true. But it’s failing severely at the moment, and said content creator must be well aware of that, given how widely reported and discussed it has become. So while of course it’s their right to do what they want, it feels disappointing that they accepted the offer instead of using their prime and privileged position to raise a huge amount of awareness of the issues that so many of their peers are currently facing, and to challenge the government head-on about it. I won’t rant about it more than that, and I won’t link to it to give them attention, but given my situation it just irritated me when I saw it!
Incidentally, regarding the government and disability support, it’s also important to note that the Timms Review on the reform of PIP is currently seeking evidence from disabled people on how effective the benefit is and whether the assessments are fair. Sure, the government are only doing this because of the severe pushback against the PIP reforms they tried to force through last year that meant they had to reconsider. So it’s very hard to trust that disabled people will truly be listened to, as the Access To Work cost-cutting has proved. But it’s vital that we try, and the more people who contribute the better. So please do submit your views if you can, before the deadline of 28 May 2026.
My New Job
In order to continue bringing in a little bit of income, I’ve managed to secure a new job over the past couple of months, one that allows me to prioritise my time looking after Mum and stay within the earnings limit for Carers Allowance that I’m currently trying to apply for.
I’m now an accessibility tester with a company called Fable, working independently on a zero-hours contract. That basically means I can pick and choose what jobs I take on from the ones that get offered to me, and the amount of offers I get will vary every week. The hourly rate for each job is also much better than I was getting as a support worker. So overall I won’t be earning as much as I did before, as I’ll be working much fewer hours, but I have complete control and flexibility over what I do now, which is what I need.
The onboarding process was very efficient and easy to follow, with clear instructions at every stage, and support available throughout if needed. And while there is a lot of training to go through, it’s well-structured and easy to understand, combining online reading with one-to-one video sessions. All the trainers I’ve spoken to have been very friendly and helpful, with a special mention going to fellow Youtuber Carrie from Carrie On Accessibility, who also has aniridia like me, so it was wonderful to meet her for the first time.
Of course, it helped that I already have experience with this kind of work, as putting myself out there through this blog and meeting people in London has directly led to opportunities to test websites for a few different organisations, and to promote digital accessibility on TV, radio and an online panel. So getting this job with Fable has merely formalised something I was already doing occasionally, enabling me to harness and develop my existing skills, which I hadn’t been able to put to use as a support worker. So doing this alongside my caring role will help me to build up valuable experience.
The job basically involves giving accessibility feedback on websites and apps, by following tasks that you’re asked to try and achieve, and pointing out any problems that hinder your ability to complete them. It’s purely about your own personal experience using your own assistive technology setup, and not what you might think others would make of it. They assign a mixture of different testers to each job to ensure they get a variety of viewpoints, and the sessions involve either video calls or written feedback. There are also regular surveys to find out more about you, so they can match you up with suitable requests.
As a result of all that, I’ve already carried out a few accessibility tests for some very well-known companies. There are some really big names who pay for this service, as well as smaller, less familiar firms, and it’s fantastic to see their commitment to improving accessibility by involving disabled people directly. So I’m looking forward to seeing what other jobs come my way as time goes on, and how many I end up doing.
It’s also worth saying that I’m still open to other freelance work as well, such as the audio description training and assessments I’ve been involved with. And another benefit of having a lot of free time is that I’m more available to participate in research projects, one of which I already have arranged in the weeks ahead.
Caring For Mum
I’m happy to say that Mum’s sleep cycle, demeanour and overall health continue to be stable, with just occasional moments of confusion and disorientation when she gets particularly cold or tired, as I explained in my previous update. Those glitches are much less frequent and don’t last as long as they did last year, but they do still happen now and again. She’s also been regaining some confidence in moving around the house and doing things by herself, which is lovely, and there’s a lot more laughter and affection from her these days.
I made sure she had a nice relaxing Mother’s Day with a few treats from M&S as well, which she really appreciated. And we’ve got in plenty of treats for Easter – partly because it’s a long holiday weekend that mandates the consumption of a lot of chocolate, partly because it’s the start of a new chapter in our lives, and partly because we’ve been unwell for about a week and are glad to be better. So it’s going to be a relaxing holiday, touch wood, and her sister who lives nearby has offered to take her out for lunch too.
So there are still times when it’s a bit difficult to look after Mum, but not as much as there used to be, and that in turn means I’ve been able to go out a bit. So when there have been rare moments of nice weather at the weekends, I’ve taken the opportunity to go out for a few long walks, and I even spent a long afternoon out at the theatre with a friend recently, and in all those cases Mum was fine on her own. I’m therefore hoping to get back to doing things like social events, theatre shows and museum visits more regularly again, as well as taking Mum out in her wheelchair of course. And I’ve now got much more time for all of that because of the change in my career situation.
I’ve also finally got around to sending off an application for a Taxicard for Mum, I’ve bought a branded Radar key for use with disabled toilets from the National Carers Card organisation, and I’m making good use of discounted gift cards for our grocery shopping from Discounts For Carers (it’s only 3% off each time, but over several weeks and months it all adds up, and there are other shops I use that I can get discounts for too).
I’m also still waiting to hear back about my application for Carers Allowance. Indeed, I’ve had to contact that department again to let them know how my career situation has changed recently, as things have moved a bit quicker than I was expecting on that front. So we’ll see what happens there, if anything. I’m not exactly trusting of the DWP at the moment, but I know I’m entitled to it.
Conclusion
So that’s where things stand at the moment, and I think a fresh start is exactly what’s needed after the events of the past year. It’s lovely to have a job that enables me to have more free time, and I’m relieved that Mum is in a better state of health and mind that has brought us closer together and makes it easier for me to look after her.
So hopefully we’ll be able to make the most of our time in the weeks and months ahead. I’ll keep you posted every so often as usual anyway. And over this Easter weekend I’ll be sharing my latest Favourites post to bring you up to speed on the entertainment I’ve been enjoying recently. In the meantime, I hope you enjoy the Easter holiday if you celebrate it or have a break from work for it!
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