Wednesday, 29 October 2014

Ten things I didn't know until I had a child who uses a wheelchair

Now I say wheelchair…

If you saw us walking down the street, you may dispute this one.  You see we have a ‘special needs pushchair.’  That means it has four little wheels rather than the two big wheels on the classic ‘wheelchair’ sign.  This can confuse people immensely.  I know this from the occasional eye rolls, the whispered comments about ‘how old’ Little J is and the faithfully self-appointed ‘blue badge police’ who like to come and stare as I struggle to lift our metal beast from the boot.  At times those looks can come with such ferocity you would think it impossible for anyone to be born with a disability.

But it is a wheelchair.  It really is.  For a long time I tried to convince myself it wasn’t.  But it is.  My lovely little boy has no mobility.  At three years old he can’t stand up, even for a second.  Despite its deceptive size, our wheelchair is heavy.  Full of postural supports and ‘tilt in space’ functionality, aimed to allow for sudden loss of tone. We don’t nip round corners, or weave in and out with the ease of buggies on the high street.  Our wheelchair is here for the duration, aimed to see him through a number of years.  And most tellingly, our wheelchair is on loan from Wheelchair Services.  The clue’s in the name eh.

But our wheelchair is our friend (a slightly mean friend who likes bruising me with metal sticky out bits).  And over the last year I have started to learn some things about life with a child who is dependent on a wheelchair:

1) The bus bar of doom is a major design fail

Buses.  They all have a big wheelchair section right?  They even do the cool hydraulic bendy thing where they tilt for wheelchairs to get on.  The bus has got to be good.
Well, kind of.  In theory, all should work well.  However, for reasons that I cannot explain, on some newer buses, someone decided that it would be a great idea to install a large floor to roof bar right next to the wheelchair section.   These can be mostly found in London, where it is nice and busy and manoeuvring is that extra bit fun. I can kind of see the point.  If you had one large wheelchair in the space and no one standing next to it, it wouldn’t be an issue.  However, the majority of the time, that isn’t what happens.  And the space isn’t just used by wheelchairs.  It’s used by pushchairs, fold up bikes, mobility walkers and the obligatory cloth shopping trolley with a floral design and a territorial owner.  With a small wheelchair like ours, you can fit another chair alongside, or alternately a plethora of random stuff on wheels.

And so what inevitably happens?  We get stuck.   Foiled by the bus bar of doom.  

Now on a busy bus, in order for us to get off, this means whatever wheeled device is next to us needs to move.  Meaning that everyone else has to move to make room for them.  Oh and we only have around thirty seconds to complete this before the doors start closing and the general atmosphere of frustrated commuters borders on ‘twitchy.’    Generally in this situation I can feel a slight rising panic as our stop gets nearer.  I have the bus bar right in my face, a brake to get off and tricky backwards manoeuvre to try and control.  The odds of not head-butting, knee jarring or wheelchair ramming the bar whilst completing this are pretty slim.   Generally it goes something like this…

I’m really sorry, would you mind just backing up your pushchair a little whilst I just...<THWACK>….I’m fine, I’m fine, really…sorry, can someone just hold the doors whilst I…<THWACK>…Ok, if you just inch a little bit that way, and I just go a little bit..<THWACK>…I’m sorry everyone.  I’m so sorry.  Right, I think we can fit through there if you just..<THWACK>….

Well done bus designer.  Well done.

2) My child has superpowers

This one was a recent revelation.  It only became apparent when we recently changed our wheelchair.  Before it pretty much resembled an oversize pushchair, with standard straps.  When out and about in it, Little J would attract a fair amount of attention.  Partly from his tendency to break into fits of laughter and partly due to his growing mop of blond curls (these can have a magnet like effect on certain passing women and daddy feels very strongly that they should not be cut under any circumstances).

However, the need for increased postural support has meant that we have had to move up to a larger chair with a supportive vest across little Js chest.  It screams ‘different’.  It was on his first day in this, as we got onto a busy train that his amazing new superpower became apparent.

He now has the power of invisibility.

It is truly amazing.  He can do pretty much anything.  Be loud, be funny, be downright annoying.   An odd glance in our direction usually then passes straight over us at sudden lightning speed.      

3) He will not use these powers for good.

With great power comes great responsibility.  And my child has zero respect for such things.  

You see being at wheelchair height puts little J in a perfect position for his two favourite pass times.  Pickpocketing and bum grabbing.

I have had to intervene with an oblivious stranger as he was merrily riffling through her open bag.  I have had to return a pen to a confused lady trying to do her Sudoku.  And worst of all I have had the hideous moment when a woman swung round glaring accusingly at the horrified man next to us.  I fessed up that the bum slapping was actually the result of a highly amused invisible child who was now looking mightily pleased with himself.
You see, I need to be good at my sorrys - which brings me onto learning 3 (ii) You can’t run fast with a wheelchair.

4) I wish I had done an engineering degree.

So, to loosen the laterals, you just need to lift the liner here, put the allen key in here, Now not that really obvious bolt there, this one round the back that you can barely reach.  Loosen with two turns counter clockwise, twist and slide the lateral, unclip the strap, reclip the strap, tighten with the allen key and refix the liner.  Got that?

<Cue slow nod>

What I really want to say is no.  No, I did not get that.  In fact I have no idea what you are talking about.  Your mouth was moving, but what came out did not process in the slightest.  What I heard was this.

So, to move the sticky outy bit, move this bit, shift that bit, put the metal bit in that other bit, left a bit, right a bit, left a bit, wiggle it, left some more and then put it back together.  Got that?

In fact I am currently praying that Google will resolve this for me.  Alternately, I will be spending the next month practicing my ‘I might cry if you don’t help me and that will be really awkward’ face to use on any nearby Physio or Occupational Therapist who actually understands laterals and footplates. 

But at least I have a free allen key. So, erm..Score?

5) Wheelie bins are the devil’s play things.  Fact.

6) There really is only one M&S.

Like many parents of disabled children I am currently facing a conundrum.   Little J is now too big, too strong and finds too much joy in dangling off things to use baby change facilities.  He needs a larger space to be changed on, where I am not required to physically pin him down with one arm to prevent him plummeting to the ground.  Only there are hardly any of these available.

There has been a campaign in recent months to try and increase the number of ‘changing spaces’.  The reason?  Because a lot of ‘disabled toilets’ don’t actually meet the needs of the full disabled community.  Many are not big enough to also accommodate a carer if help is needed to access the toilet and they have no hoist.  They also do not have changing benches, which is what we need to use at this stage. 

So our option the majority of the time is the floor.  That’s the floor of a public toilet.  Yuk.

Now we have a sizable changing mat, but that really isn’t the point.  I have to carry that mat round with us and clean it, so I reserve the right to be picky about where it goes.  We have been known to tour toilets simply to find one with a regularly cleaned and suitable patch of floor.   

And so, we have developed our ‘go to’ places.  Shops that we look out for wherever we are, knowing the odds of success will be pretty good.  So far, Marks and Spencer gets my prize for general cleanliness and large disabled toilets.  (and for vegetarian Percy Pigs…I like you very much for those too).

Although if you fancy installing some changing benches I know you will make a lot of people very happy…..and I’ll even buy extra Percy Pigs to say thanks.  (That’s a lie. I’ll probably buy them anyway...that's not good negotiation is it?)

7) There are some very bored dads out there.

I’ve now had this one three times.  Mostly with Little J’s old, pushchair like chair.  I’ve noticed the stare from across the shop or across the pavement.  I’ve thought it a little brazen to stare at a wheelchair so obviously, but hey, each to their own.

Then I’ve noticed it.  The look.  The slight hint of admiration.  The intake of breath.  The penny dropping moment that they realise.   Can it…no…can it be…can it actually exist?

You see what I have discovered is that a lot of dads must spend their time mentally planning an activity I can only describe as ‘pimp my pushchair.’  This has led to three awe struck occasions where I have been approached with the hallowed words,

Your pushchair…your pushchair has REAR SUSPENSION!!!

I have never been able to shatter their illusions and tell them it is actually a wheelchair. Instead I just say thank you and revel a bit in the jealousy as I take a curb at speed. 

8) Train roulette is no fun.

‘The train doors will open on the left hand side.’

‘The train doors will open on the right hand side’

‘The train doors will open on the left hand side’

‘The train doors will open on the right hand side’

Annoying isn’t it?  Now imagine every single time you have to bend down to take off the brakes by hand (because you don’t wear steel capped boots).  Then you have to spin around a heavy chair and annoyed child on a moving vehicle and shift to the other side of the train to get out of the way of everyone getting on and off.  Its particularly fun if you are trying to give medication or food (which is unavoidable at certain times of the day).   Next time I think I’ll take the bu…oh, wait.

9) Oh Christmas tree, oh Christmas tree, how massive are your branches...

Don’t get me wrong.  I love Christmas.  I really do.  But it can make accessing most shops virtually impossible.  Extra displays of decorations and novelty gifts start popping up smack in the middle of the aisle.  A lot of the time, we simply don’t fit.  Or it is a case of squeezing through and hoping I don’t emerge with a child who has acquired a tinsel scarf, bauble earrings and is clutching a porcelain baby Jesus.

10) When it’s windy, it is physically impossible to hold a cup of coffee, steer a wheelchair and stop an A line skirt blowing up.

10 (ii) I probably value caffeine too highly.

So you see I have learned a great deal since being mother to a little boy who is dependent on his wheels to get about.  And whilst it may sound like I resent his chair, or am upset by his chair; I’m really not.  His chair is his potential independence.  His chair is his mobility.  Being out and about makes him happy.  And that makes me very happy indeed.

And he really does love being out.  Nothing brings more joy to his little face than hearing me squeal as we accidentally take a downhill slope at an overly ambitious pace. 

And we can.  We can because of technology and because of the healthcare system.  It’s not always a flawless process, but it’s there.

However, accessibility is still often a huge challenge.  Only this month, it was finally announced that the new Crossrail network through London would be step free.  Surely this was a given in the city that hosted the Paralympics not so long ago?  No actually.  There has been significant campaigning from the disabled community after initial reports that seven stations would not be accessible.

But it’s not just about accessibility.  It’s about ensuring that people with disabilities have the same opportunities as everyone else – a necessity if inclusion is ever a true possibility.  And that matters.  It really should matter to all of us.  We are an aging population.  A population whose needs will grow and become more complex.  A great deal of us will be dependent on some kind of equipment to get around in the future (I’m holding out for the Back to the Future hoverboard).

But things are changing, and there is certainly more awareness of accessibility than when I was a child.  I see more lifts.  More wheelchair access signs.  More ramps.   Not all the time though.  Sadly, many places remain completely off limits.  But perhaps one day. 

Perhaps when Little J is older full accessibility will lead the way.  And true acceptance will follow.