Hi there SUPERSTAR! I hope you’ve all had a great week!
Now, I’m sure most of you know my story but for those who don’t, I’ll give you an overview. I was born with Cerebral Palsy. It’s a neurological condition and it can affect people in different ways. In my case, it’s affected all four of my limbs. This means that I have weak muscle tone and use an electric wheelchair to mobilise.
The main impact I suppose in my life is the reliance of having to use Professional and Personal Assistants (PAs). I need my PAs on a day to day basis. They assist me with all personal tasks – washing, getting dressed, tidying, preparing food etc. They also assist with the professional side of my life too – admin, making calls etc. And notice that I’ve not used the word ‘carer.’ Some people aren’t bothered about semantics, but I am. My PAs don’t ‘care’ for me as I don’t need caring for. They assist me to live the life that I choose to live and with that, they require a lot of skill set.
I’ve been an employer since the age of 15. I’m now 30. I’ve had over 100 PAs during this time. I’m quite well known in the ‘disability world’ for speaking openly about the challenges that having a PA can bring.
Not everybody can be a PA. And those who require a PA will have very individual needs. And the dynamics are complex. Boundaries can get blurred. There’s constant role reversal, one minute you’re having to do an appraisal, the next you’re relying on them to help you go to the toilet! And when the relationship works, it’s the best thing. If it doesn’t, things can get sour.
You get your bog standard ‘how to be a good employer’ training (although that’s only been a recent thing). But there needs to be more than that. Often disabled individuals are put into the position of being an employer. They try to get their heads around the legality of it all, whilst balancing their day to day living. Being an employer can at times be hard work. It’s hard even when you have THE BEST PA team, due to the admin associated with it – rotas, timesheets, dealing with holiday and sickness etc. It’s an emotional rollercoaster and people need support with this rather than black and white protocol.
However, after 15 years, being an employer doesn’t stress me out as much as it used to. It’s been a long long journey but I’m finally getting there. I’m more confident in recruiting the right kind of people, I’m better at managing them as well as my own emotions.
In fact, I realised this the other day. As somebody who uses PAs, you dread ‘the text…’ This is the text to say somebody can’t come to work. It fills you with dread and panic. This isn’t just any job, I rely on PAs to get me out of bed in the morning. I got that text. Not on the day of the shift but a week before. And non of my other PAs, in my team, could cover!
Now a year ago this would have sent my mind racing. I would have started to think a lot about the future. How come my other PAs can’t cover? Is having my own team too unreliable? What about when I’m working more, I can’t have this happening? What about when I get married and have babies – who will help me because I won’t be able to help them!?
Seriously- I used to stress so much. But because I’ve worked on myself over the past year, I handled this so well. I took a ‘step back’ and put things in perspective.
My PA Team are actually really good. We get on quite well and we are very respectful of each other. We are all good friends, and I know this is controversial to some, because of boundaries, but I know it wouldn’t work as well for me if we weren’t. Because we are good friends, I know that they feel ‘terrible for having to let me down.’ So when they are absent or can’t work, it’s for a genuine reason. Sometimes everybody’s life can get in the way! So, I can’t ‘blame’ them as there’s nothing to blame them for. This situation is so rare it happens probably 1% of the time.
Secondly, I had 7 days to sort this out. So there were a few options before going into complete meltdown! After asking whether the other team members could cover, I text an old PA of mine – but she was away. Then I text another old PA, and she could assist in the morning! Boom! Happy days. It got sorted!
Truth be, I’ve never been stuck completely. Everything has always sorted itself out. There’s always that fear though and that’s normal. Our brains, genes and past experiences are the things that produce anxiety! And that’s ok. But I’ve learnt that managing my stress levels has to start from within. Yes – it boils down to practicing ‘self care’ again!
Somebody asked me yesterday – ‘are you happy?’ I replied, ‘Yes, the happiest I’ve ever been.’ They then asked, ‘do you worry that it’s just a blip and things will go back to where they were before?’ I replied, ‘I don’t believe it’s a blip, but what I do know is that I have to work on creating ‘happiness’ each and every day through ‘self care,’ the moment I stop, the moment I know things can get hard again.’
So if you’re a disabled employer, I hope this blog has helped. If you’re not an employer but feeling a lack of control, then I hope this blog has also helped.
Life can be s**t. It can be miserable and hard. But it’s also full of colour and happiness. Start from within and I guarantee you’ll start seeing the world differently.
Until next time,