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Guest blog: Jo Tolley

It's how I roll

Why life on wheels has taught me to ride in my own lane

I’m a writer and advocate.  I’m the accidental creator of Written Wheel and the beyond proud Co-Chair of Lincolnshire Young Voices.

I have Quadriplegic Cerebral Palsy (aptly renamed Quirky Chronic Peeing) and I ride through life on wheels.

When I was asked to write for AJM Healthcare, I didn’t have a clue where to start.  For sure, I’ve had plenty of wheelchairs in my twenty-six years – my first manual one was fluorescent yellow; my first powerchair acquired a puncture by day one.  In terms of constructive criticism, it’d be nice if there were air holes in my backrest because on a hot day, sitting in a chair is the most hideous thing.  It’d also be appreciated if I could have a second cushion (on account of my Chronic Peeing).  But as a rule, I don’t give my chariot a second thought – it’s just how I roll.

However, after my cogs had whirred around my optimum thinking time of 2-4am I realised my initial reaction couldn’t be further from the truth. Wheels enable those who roll to get from A to B in the same way that legs – for those who have a functional pair – allow them to get from C to D.  I make the distinction because the rolling route is supposedly less cobbly and hilly.  I pay attention to my spokes as much as you two-legged folks take note of your feet.  But without a doubt, my spokes are the most obvious byproduct of my CP, and I do mean Cerebral Palsy on this occasion.  My wheels forced me to stand out from the crowd during an era where all I wanted to do was fit in.

Once I had emerged from what I now refer to as my ten-year quarter-life crisis, it dawned on me that when all else fails I have two things: a way with words and wonky legs. So, in 2018, I started scribbling about my half-naked hiking excursions; my precarious trips to the loo and how I try to live my best disabled life every day. The point is, I knew I had a somewhat alternative perspective of what living with a disability meant. I also had a determination to shift the misconception that people with additional needs should be pitied, misunderstood, or seen as anything other than who they are.  Written Wheel was founded as a blog, transpired into a business and it aspires to attain world domination – somehow! Shameless plug number one: click the link to read more.

The problem with being a writer is I have a habit of spending a lot of time in my own head.  Whilst I think my tall tales are hilarious, I wouldn’t be achieving what I set out to if I voiced my somewhat unconventional opinions and simply expected people to listen. Positive steps will only be taken when there’s common ground and unity.  This is when I discovered the fabulous Lincolnshire Young Voices (LYV).

Launch Day
Emma Cross and Jo Tolley

Established in 2017, LYV is a pan-disability participation group.  Funded by the Local Authority and backed by the NHS, we research and act upon issues faced by young people with Special Educational Needs and Disabilities (SEND) across the county.  Emma Cross and I are honoured to be the Chairs (ironically, in chairs) to a committee of eight phenomenal individuals who are collectively driven and impassioned to inspire change for and in others.  From working to ensure the accessibility of Lincolnshire’s public toilets and transport, to making the Local Offer the best it can be, we are on a mission to work with services and organisations, such as AJM, to help them understand how SEND-friendly they are.  

Holistically, we strive to raise awareness and support of who Lincolnshire Young Voices are and what we do.  Together, our voices make a difference.  Now, for my second shameless plug: please click the LYV link for more info or email, if you have any questions.

So, in a nutshell – which spiralled into an essay – that’s me.  What has life on wheels taught me?  Well, I guess the biggest lesson I will never learn is to always locate the toilets and if there aren’t any, to not even crack a smile.  Smiling leads to laughter; laughter Chronic Peeing.  All jokes aside, I realised I couldn’t fade into the background when my chair was brighter than the sun, nor remain incognito whilst resembling a garden gnome on the side of the road with a flat, thorn-filled tyre.  It took a quarter of a century, but I had an epiphany… It’s a waste of energy to attempt to fit in when everyone has the power to stand out.  I ride in my own lane and applaud others who do the same.  It’s how we roll!