My Inspiration Part 1: Do We Really Understand?

I have a rather kick arse friend.  

When I tell people that she has Cerebral Palsy (CP), they often give me kind reassuring looks, obviously thinking what a nice person I am to be friends with someone who has CP because a) they have assumed that Jemma has a learning disability and b) obviously if you're friends with someone who has a disability then you deserve a kindly head dip for your services to the disabled.  

Well you can take your head dips and kind reassuring looks and shove them up your bottom.  Why?  Because Jemma isn't any less of a human being or deserving in life.  And I am so not friends with her because of her disability! Although I will not deny that the ease of finding parking spaces  and being able to lean against her chair when drunk makes it easier to be her friend.

Hell no.

Jemma is a FUCKING WARRIOR.

I'm sure people think Jemma and I meet up for cups of coffee in disabled friendly cafes only and talk about her next physical therapy appointment. People think that because Jemma won the court case because her CP was caused by the hospital she was born in, that she must be minted.  Life must be soooo easy.

So this morning after yet another chat with Jem, where life is very fucking frustrating, I want to blow away a few myths for you.  Why?  Because I want to talk about someone who inspires me.  Who for sure makes me think hard about how I live my life and no matter how tough stuff is, just how fucking lucky I am.

Jemma will tell you herself, that we get on because I am horrible to her.  What she truly means is that I forget she has a chair (until she runs over my fucking foot again). I once did a motivational talk, and as part of it I talked about how Jemma motivates me and rather idiotically said "I won't point her out as it will only embarrass her".  Obviously this is stupid because afterwards, Jemma is the only one in a sodding wheelchair so of course it's her. 

My own experience of being in a wheelchair and of disability mean I understand some of what Jemma goes through.  I've seen it from the other side so to speak.  But with Jem I also see the fucking frustration she has to go through just to live a normal life.

Jemma and I don't sit in cafes talking about her care (all the time), although we do spend a lot time in The Tea Hut in Woodbridge where Jemma will always try her best to trash the place with her chair before leaving.  Over the years Jem and I have done some crazy shizzle together. 

Like the time we drove to London to see Jake Morley play and she kept putting me off so we nearly took a wrong turn, then we did and ended up in a dodgy industrial estate that looked like something straight out of Grand Theft Auto. 

The time she spilled Quiche all down my leg before I had an important meeting at work. 

The time I crawled under the desks at work to scare the shit out of her ( to be fair this is pretty evil of me as she has muscles spasms and jumps half a mile and it probably fucking hurts, but she makes me laugh when she does it so I do try to find ways to scare her). 

The time we went to see Stephen Hawking speak and he was late.  Jem not only fell asleep during his speech later, but whilst waiting for him to arrive she pushed a button on her phone and Siri started up.  Only Jemma has the man siri.  And every fucker in that place though Stephen Hawking had walked in when her phone said "I'm sorry Jemma".  I thought "wtaf - we're here to see him and she already knew him!".  The whole audience turned round to look at us.  I pissed myself. 

The time we did the colour dash together and I nearly passed out from trying to keep up with her in her 8mph sodding chair. 

The times she has sat like a crazy bastard in the freezing cold waiting for me to finish a race because she loves me. 

The many gigs we have been to when Jem who can't whisper for shit tries to say something to me just as there is a lull in the music and everyone turns around. 

The times she watches me paint, like a right creepy bastard and falls asleep in the process because it's relaxing.

The times we get drunk and do daft shit together - like reversing her chair into a tree.  Or that when she's drunk her grip is like a fucking vice so hugs goodbye make your life flash before your eyes - because the love comes out of her like a giant bear.  

All the times we argue when I treat her to stuff, because I see it and think of her, even though she does the sodding same for me.

So many happy times.  And I know so many more to come.

This all sounds great doesn't it?  And it ruddy is.  But here is the myth busting.

Jemma is trying to live her best life.  But that court case?  She can't just use her money willy nilly because who knows what the future holds for her. So it's managed by an outside source.  So some people struggle with that because they don't see the stuff behind this ball busting, go getting individual.  Why she is such a fucking inspiration.

Jemma will not mind me saying that she needs around the clock care to make sure that she can do the stuff we all take for granted.  Imagine you can never go to the toilet and wipe your own bum again.  Fucking sucks doesn't it.  Imagine you wake up in the morning and if there is no one else there you're stuck in bed.

But it gets worse.  Imagine you have to rely on other people and employ people to take care of you. So adverts have to be placed, and you employ people, but how do you know they're right for you?  What when they're not.  What when they don't get how you function?  I ache for Jem when I see her struggling.  Because this is her life.  Her every day.  And before she can even do a day, she has to have the right staff in place.

Imagine then, that you want to book a holiday or an activity.  Firstly you have to go and hold out your hand and ask the person who takes care of your money if you can do it.  Yup.  That's right.  Now there's nothing wrong with that per se.  It's how things are looked after, but imagine that.  They can say no.  You're not 100% in control. 

Imagine you book the holiday Woo yeah!  Now to stand up and do shit like a shit, you need a standing aid and the holiday company try and tell you that they class it as sports equipment so they will charge you extra to take it.  Hmmm nice - paying extra so you can have a poo. But then when you're sorting out the finer details you get told that the holiday company thought that as you were travelling in a fold up wheelchair ( and trust me I had a battery one like Jemmas - they weigh like 95kg and no fucker is getting them on and off an airplane easily), they assumed that you could climb steps and so now you cannot use the bus to connect you from the airport to the resort so what actually happens is that you have to cancel your holiday.  It's not your fault but you lose money. 

By the way, I make no bones about this, the company is Love Holidays and I personally feel that they should take a long hard look at themselves, because planning a holiday for Jemma is a massive fucking operation.  She has to make sure that her staff are available, that she can access everywhere blah, blah,  blah.  You can imagine.  Jem can't bloody relax till she is there. 

And this is why this woman inspires me so much.  Because I re-read what I have written and I know my Jemma goes through this, but she is nearly ALWAYS smiling.  Like us all she has her down days but she will do anything to put a smile on someone else's face and that is why she is one of my biggest inspirations.

Jemma it is a privilege to know you.  Fucking annoying to be told we look like sisters (joking I wish you were my sister), but you can't have everything in life.

Keep being you, because I know that you inspire more than just me in this world.

You fucking rock.


1 comment

  • Love this Bon. The pair of you 🥰🥰🥰. Love holidays need to be held responsible for this too!!!! Never heard of them and now I have will never use them 😡🤬

    Emma

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