The Text…

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,

R

Why I want new legs…

Happy Wednesday everybody! I hope you’ve had a great week since we last caught up and I hope you enjoyed last week’s blog on self care being ‘not so’ cliché!

So I’m sure you’ve been loving our blog posts from our ambassadors! They’re all AMAZING! However, there has been one ambassador in particular who has caught my attention recently and that’s Jarard!

Jarard has been writing about his journey using Rexbionics…and I’m fascinated by Jarard’s journey. You can read his story here.

I originally heard of ‘Rex’ back in 2010/11 when it was very new! It’s an exoskeleton machine that helps individuals with mobility impairments to walk.

When I mentioned using it to one of my friends at the time, I remember how negatively he responded. My friend is also disabled like me. I understand why he was concerned though. To him, it was because I used the exact same phrase as I used above – to be able to walk.

As disabled activists, we have fought hard to change society’s perceptions of disabled people. We actively talk and promote ‘The Social Model of Disability.’ This is the theory that society has a responsibility to remove barriers that disabled people face – both physical and attitudinal barriers. It’s once these barriers are removed so is disability. For example, what makes me disabled is when there’s steps to enter a building. It’s not my impairment itself. Negative attitudes also play a big part in this. For example, negative attitudes or a lack of willingness to adapt to somebody’s needs.

The traditional view of disability has been ‘The Medical Model of Disability’ and this is when the onus of fitting into society is placed on the individual with the impairment. It’s a very unhelpful view and this is where prejudices from other people come from.

So in short, I get why my friend was concerned. In me wanting to be ‘able to walk’ can be viewed as a Medical Model approach. It’s me fitting into society rather than society meeting my needs. And wanting to ‘fit in’ can cause all psychological distress because there’s that element of not accepting who you are.

I didn’t pursue Rex at the time. After researching into it, I realised that at the time, that it was more appropriate for people with Spinal Cord Injuries. However, after speaking with Jarard and doing recent research, I know Rexbionics have started to investigate how this could be used with people who have other impairments like mine.

So why do I want new legs? I don’t actually, but it was a catchy title! I like my legs. And I accept who I am. I actively empower others to accept who they are through my coaching business. And I challenge society’s perceptions on perceived capabilities.

But I am still keen to explore Rex. This is because I know that standing would have huge benefits for me. Even if it’s a little, being able to wait bare would help me sleep and reduce the stiffness in my legs. For me, it’ll be like the equivalent of working out at the gym, rather than being able to walk per se. I wouldn’t be substituting my chair for it, but I do think it’d help with a lot.

I know leisure facilities should do more and society in general to meet disabled people’s needs. However, I’m so excited about the possibilities of what Rex could bring.

If I’m being honest with you, it’s about artificial intelligence too. One thing I hate is to rely on others and rely on ‘accessible facilities’ for me to go to the toilet. I think being a disabled woman also brings its own challenges. I would love to use a device to help me be more independent myself and I know Rex can’t do this but it definitely shows hope for the way the future may go and I know this may be controversial but something that can offer more choice to people.

I’ll keep you tuned on my journey.

Until next time,

Rupy

(p.s. you can find out more about Rexbionics by clicking here)

Some Way On My Road To Acceptance

“A journey of a thousand miles begins from where one stands” Lao Tzu- Tao Te Ching.

When I was asked to consider becoming an ambassador for You Own It, I have to admit I was uncertain about doing so. After all, amongst other things, the problem with starting a blog (or any journey for that matter) is that time honoured question of where do I start?!

So I guess to start somewhere is to go from the beginning and that’s what I’m trying to do with this opening post. I’m writing this blog as having turned thirty last year. I’ve gone through two decades where I got a better sense of myself but not an embrace of myself. I’ve also had a major problem with anxiety that has meant that I’ve been held back or at times held myself back from doing things that I want to do, whether personally or professionally. And it’s taken me to some deep dark places as well as more than a few stifling ones, meaning that I’ve rued more than a few missed opportunities as a result.

This lack of acceptance, combined with paralysing anxiety, came to a head last year when choked to the limit by a toxic cocktail of different factors. I almost completely lost sight of who and what I am. Something which could have had catastrophic consequences for me in more ways than one. So after amongst other techniques, a trip to Autscape (an annual conference for autistic people) last year, I began really focusing on my road to getting acceptance, turning my nascent steps into something tangible.

And it’s not just my own condition, Aspergers Syndrome that I’ve got to get a better embrace of. A samurai quote that I use sums up what I’ve got to learn to like: my own warrior complex. A complex that I knew I had but had been not willing to entirely accept as part of me.

I’ve taken some steps on my journey of acceptance, including going to Autscape and learning the art of mindfulness. But as this blog goes to press I’m still got some way to go. And with embarking on a process of shifting orbit from living in a town to a certain city, it’s one of a number of challenges that I have to face in my life.

So what’s the message that comes out of this blog? I guess that it’s the time honoured point that some journeys start later in life than others. But they’re often the ones that need doing to make yourself the best you can be. And they ultimately begin, as this blog post began from where one is currently standing.