Spontaneous Planning

We are at the end of another half term and have made it through in one piece.  I am so grateful for every school holiday we get to spend together because we have lost so much family time over the years. This time of normality has also shown us how different our lives in the real world are as we try to function as a family, this week provided many examples and made me realise that what I am constantly trying to do is spontaneously plan in order to do the normal childhood stuff other families take for granted.

It can't have escaped anyone's attention that there is a lot going on in my home town of London at the moment - all this week we have had the Diamond Jubilee Celebrations then in a few weeks time the Olympics start.

 I want to make sure that my children have some memories of these once in a lifetime events, as well as experience all the other stuff that comes with family life in a fantastic city like London, but our version has to be modified to take into account the unique needs of our family.  While the rest of my friends were holding street parties or travelling into London to watch events we were tied to the house, the weather didn't help but in life before Daisy that would not have held us back.  With Daisy however something like a street party away from home is a logistical nightmare - I would have loved to have taken her along to one of the local parties but at the moment we are having lots of problems with her stoma bags staying on and her catheters coming out - where would I change these if it happened?  By their very nature street parties are outdoor events, and the British weather did not dampen the celebrations locally, but a neutropenic child in the pouring rain is not a good combination, so we gave the street parties a miss.  Again crowds of people lining up to watch the river pageant or view the jubilee concert on a screen in a public park are not an attractive option for a boy with aspergers who hates crowds or a harassed parent pushing a wheelchair and a ton of emergency paraphernalia, so instead we took our place on the sofa and relied on the BBC for our jubilee coverage.

But in the back of my mind was the nagging thought that we could do more, why just because we have a slightly more complicated family should we miss out on a national event.  It's not like I'm a staunch royalist!  I just remember the Silver Jubilee (yes, I'm that old!), it marked out part of my childhood, I wanted my children to remember the Diamond Jubilee and that we had made an effort and done something to mark it.  So the spontaneous planning kicked in, the weather, from being tropical the week before was wintery so a barbecue was out of the question, instead we invited a few friends around and had a tea party and watched some of the coverage together.  Daisy loved it, she is so sociable and she even started to use a new word, "Queen".

Later in the week I decided to take Daisy to see The Wiggles stage show.  To the uninitiated The Wiggles are the biggest thing to happen in Australia, ever - they are huge there, four men in bright shirts singing children's songs, their concerts are sell outs.  Now they are not so big in the UK, but Daisy knows them well - probably as a result of hours spent in hospital and desperation on my part to try different dvds to break up the monotony of constant Peppa Pig episodes.  I had left it until last minute as I didn't know whether we would be able to manage to get to the venue with all the other complicated logistics and social life of a large family with only one car.  I booked the day before and got the last wheelchair accessible spot and a ticket for me, so I decided to spontaneously plan again and go to the concert by public transport.  After all - we are the host city for the 2012 Olympics and Paralympics so the trip on the tube by wheelchair and a visit to the theatre should be a walk in the park......hmmm

Theo is very good on public transport, he uses the tube every day to go to school so it's part of his life and the journey we would take included part of his school route so he agreed to come with us to the theatre, wait in Starbucks with his book until the show was over and then come home with us.  Thank goodness I asked him to come with us because although the Transport for London website told me that there were lifts at Wimbledon, Earls Court and Hammersmith where we needed to get onto the tube and change lines, it didn't clearly explain that I would need a second pair of hands to lift Daisy's wheelchair in and out of the tube carriage.  Now to be fair I could have asked a member of staff to fetch a ramp to help get Daisy on and off the tube but this is not a long distance, intercity train, this is the London Underground on a busy Saturday with hundreds of people getting on and off the train and no member of staff to be seen.  So Theo helped me get Daisy onto the tube, get her off the tube to change lines, find the lift to change platforms, get back onto another tube, get off the tube and find yet another lift - and while plenty of people saw us struggling, no-one offered to help, able bodied people got into the lifts who could have walked up stairs and able bodied people sat in the flip down seats which doubled up as wheelchair spaces and didn't think to offer them up.  Daisy was oblivious to all of this she was so excited as it was her first trip on the underground, she signed train and every time we went through a tunnel she shouted "dark!" - she loved it and it made the difficulties of getting her to the theatre worthwhile.

Now being a spontaneous planner I had googled the theatre's accessibility for wheelchairs the night before and knew to bring along my RADAR key, the special key to unlock the accessible toilets.  As I was going to be on my own in the theatre I wanted to ensure that her stoma bag was OK and her catheter emptied before the performance started, the audience was being held in the lobby before the main doors opened but as the disabled loo was in the auditorium I was told to make my way through and a steward would show us where to go.  So far so good, so being very British and polite I inched my way through the crowds of over excited toddlers and their frantic parents, until I reached the middle and the woman I will forever refer to as the Wicked Witch of the West.  She refused to move, even when I pointed out that I was not jumping any queue I just needed to get my child to the toilet in order to empty her stoma and catheter before the show started (great now everyone in the lobby knew that my daughter has a stoma and a catheter), "No", she said "I won't move, you will just have to wait".  Of course being Britain there was lots of tutting and a space was cleared around her and as I walked past I said "I'm sorry if my disabled child has inconvenienced you, she's just trying to have a childhood"

Needless to say, Daisy loved the show and the Wiggles were amazing - they were so aware that many of their fans have additional needs and came out into the audience to say hello to as many children as possible and Daisy, tucked safely on her viewing platform had her own special handshake from Jeff, the purple Wiggle - she was beside herself and I soon forgot about the wicked witch.

Going home we had to do the journey in reverse, or should have if the lifts to the platform we needed were actually working.  Apparently I should have checked the internet before boarding the train according to the less than helpful staff member at the ticket barrier - excuse me?  I'm a spontaneous planner - I planned this journey last night when your lifts were all working, am I now expected to check the internet before I step onto a tube to make sure I can actually access the platform?  So Theo and I headed to the only working lift to catch a train in the wrong direction to a station where the lift was working so we could change platforms and come back down the line and go in the direction we had wanted in the first place.

We got home eventually, nobody helped lift the wheelchair on or off the tube, I saw a beautiful shiny ramp on the platform at Earls Court but no staff member to use it, but we managed and got home an hour later than we would have if we had been travelling without Daisy, but she got to enjoy the Wiggles and a tube ride all in one day and again happy childhood memories were made.

But what does this mean for the Olympics - this is totally off limits for Daisy, there is no way we could go with her to any of the major events in the centre of London or at the Olympic village if our experience today is anything to go by.  This is fine, we actually have tickets for rowing with a wheelchair accessible seat and a reserved parking space, but what if I had really wanted to take her to an athletics event?  And what about visitors to London with mobility issues, what about paralympic athletes?

I am determined that our family will not become hostages to disability, we have to make things work for our children so that they can have the experiences and fun that other families take for granted, but the effort to do this is immense, so planned spontaneity it will be with a hefty dose of British stoicism thrown in for good measure.


  1. Firstly happy birthday!

    Some people are so unbelieable, I think your response to the wicked witch was a great one. Your very brave to do the underground and a chair, I've decided I need to become rich before traveling in London so I can hire a chauffeur! I have tickets for the diving and a disabled parking space, my dad is not looking forward to driving their with so many roads closed and things backed up, attempting to get there let alone back is going to be interesting! Even if I was able to go by tube I would dread it, your blog just shows how accessible the 'accessible' stations really are. 

    See you at the party :)

  2. ginavalley3:47 am

    Beautifully written. Thank you for sharing!

  3. I wanted to cheer reading this - for you! This is exactly my attitude too, but it's such a shame that other people have to put road blocks in the way of children with disabilities leading a normal life. Oh and thanks for the timely reminder, I really must get myself a RADAR key - funny, it's another thing the State services never told me about!

  4. thanks Viks! It really concerns me the lip service being paid to the word "accessibility" especially in an olympic year when all the eyes of the world are on us but we are going to exclude a large number of spectators and participants because we can't quite get things right - and don't get me started on the attitudes of the good old british public!!! x

  5. Rosanna Bevan4:01 pm

    I'm so glad you and Daisy enjoyed the Wiggles, despite the wicked witch - that is almost unbelieve! It's incredible someone thinks that's an appropriate way to behave, especially in front of their child or children, what an awful example to set.

    However one point to raise, and I don't wish to sound rude, but how do you know the "able bodied people who could have walked up stairs" were able-bodied, and could walk up stairs? My sister has cerebral palsy, and walks fairly well unless you look closely. And even when you look closely, you don't see her substantial orthoses or her increasing tiredness. She can walk up stairs, but if she did all the stairs on a day out, and took no lifts, she'd be a crumpled heap halfway through the day. But nobody can see this, so we can get funny looks when we use the lifts.
    I had similar problems myself a few years ago when I had a long-term illness and had chronic pain - walking was painful and I had no energy, so lifts made my life easier, even though I didn't look like someone who needed to use a lift. To people who knew me well, I looked pretty ill, but to people on the street, I looked totally "normal" and had no right to use their lift - more funny looks. (Thankfully after surgery I'm fine now.)
    So what I'm saying is maybe the other people didn't need the lift as you said, but maybe they did - we'll never know.

    Anyway, glad Daisy had such a lovely time. And you should send this blog to TfL, they clearly need to do some sorting out!

  6. Fair point and I absolutely agree - I have a good friend with MS who gets funny looks all the time as her disability is fairly invisible but she needs to use lifts & disabled bays etc, the thing that frustrated me yesterday was the group of mother's with their children who crowded into the lift then commented to me "we are being a bit lazy!", not a great role model for a child or the gangs of youths who piled into the lift at Acton town rather than use the stairs - grrrr!  Theo is very well trained, he came with us as far as the lift then seeing that other people also needed it announced loudly "I'll use the stairs and see you at the top"

  7. RenataB9:12 pm

    We've given up travelling on the tube. It was too difficult, and dangerous at times for Dominic. Perhaps I need to borrow Theo? :-)

    So glad you got to the show x

    Thanks for adding the post to the blog hop

  8. Brilliant post.  Glad Daisy had a nice time and fab that you tried to use the public transport system.  It is hugely frustrating, but it is only if disabled people actually use it and then complain that they are ever likely to do anything about it.  Very wise to take your Son with you too.  As part of my work I'm involved with a couple of disability campaigning organisations in SW London and there is also an organisation called Transport for All who are trying to raise exactly the issues you have raised in this post.  I wondered if you would like to send them a link.  They are on twitter @transportForAll.  

  9. Glad daisy liked th wiggles, I am taking my eldest boy this week. I did look last minute at trying to get a disabled spot but was too late, so H will miss it this year. I am disgusted at the public transport issues, god alone knows how the Paralympics is goin to work! And the wicked witch should be ashamed of herself.

  10. Brilliant. So glad you made it and had an enjoyable time (apart from the witch, glad to hear you didn't hold back!). With our ASD girl I felt the same way about going out and about for the Jubilee - I know she can't cope with crowds and waiting, and street parties (well any parties) are not her thing etc. But it is important not to slide down that slippery slope of just staying at home, so thanks for reminding me of that. And any time you'd like some help for a trip into London, please do call (or tweet!). I'd love to share a special day out with you (although I'd probably come alone ;) )

  11. Rachel10:33 pm

    Great post. I am rather humbled by hearing about your experiences of getting around London... but so ashamed to hear that no one offered to help you! Shame on everyone who could see you. And shame, naturally, on the Wicked Witch of the West, for whom karma surely has some kind of humiliation lined up very soon ;)

  12. Rosanna Bevan10:44 pm

    That makes a lot more sense, and seems a lot fairer for you to say so, if you'd heard them say they could have taken the stairs!! Well done to Theo, I like it when you can be pointed about that kind of thing, though I'm not always sure if other people notice. Thanks for the reply.

  13. Ella topp6:08 am

    I am so glad you got to see the wiggles (I am Australian).  We were given tickets by the starlight foundation to see the wiggles, late last year and had a wonderful time!