Day Out with a Disabled Child

It was a toe dipped in the water really, W is only 9 months old but we were out of our comfort zone for the first time and at times felt like we were on show. I know it’s only the tip of the iceberg of what we have to come but people’s reaction to this tiny baby were interesting, a study in human nature almost.

We went into London for the day, to the Natural History Museum mostly, and it really felt like a big deal, our first day where we weren’t a stone’s throw from our van/car or surrounded by those who know Willow, those for who Willow is a normal little girl.

Obviously at the moment Willow is wrapped to my chest, she’s not being pushed in a chair, but she’s glaringly different to other babies, the oxygen tank and hearing aids are the big give aways and people do look. Some look and look away, some stare and keep staring, some look but try not to look like they’re looking, the ones that you take a glance back over your shoulder at and they’re looking hard.

People stepped aside, they made room, they smiled, they moved seats on the train so we could sit together. I was warmed by human nature and in London of all places.

You could have heard me in the past lamenting on how gloomy and unfriendly London is, how nobody looks at anyone else, people don’t talk or pass the time of day, how nobody smiles! Well not today, today we had a totally different experience, people were kind, considerate and respectful, people smiled!

Ok, so they may well have mostly been tourists but I was really warmed by people on the train going in, the grumpy commuter was a real person instead of a drone. Is that what having a disabled child with you does? Does it bring out the best in people’s nature?

Of course, nobody asks what’s wrong, though I know they’re wondering, sometimes I’d like to just tell people when they’re looking, “she has cerebral palsy, she can’t swallow so the tube goes into her tummy and she needs a little help breathing, hence the oxygen”, but generally I don’t. Kids are great, they ask and I love to answer.


Today in the train I got it wrong, there was a woman, German I think, she’d been looking over at Willow constantly for quite a while, I politely looked away but she continued looking so I asked her if she would like to ask any questions because she keeps staring, not aggressively, but pretty sharply as she really was staring, it turns out she was disabled herself, her carer was with her, but she spoke little English, she said she just likes babies. I felt awful, the woman got pretty upset when her carer/translator spoke to her, she put headphones on and looked out the window crying I think. I apologized, they smiled, she stayed like that for quite some time. I asked if she would like to meet Willow but it wasn’t until the end of our journey that they asked if that would be ok and she came over and stroked Willow’s sleeping head, we smiled and all was ok again.

It got me thinking about how disability can be so hidden, this woman looked ‘normal’ and that was a disability to her in itself, had she looked different then I’d probably treated her differently from the off. I can’t decide if that’s a good or bad thing, I mean I would like to think that we were all treated equally but on some levels we’re not all equal. Would Willow attract as much attention if she didn’t have the tubes? Well, probably not! Perhaps I like the attention she attracts, I mean she is a super duper special little girl 🙂 Just like Arthur is a super duper special little boy.

A stranger on the train told us today we have great kids, we know that but nice to hear it from random strangers.

One reply on “Day Out with a Disabled Child”

  1. that is a wonderfull storey i just read i met you at donnas and donna keeps me up to date on how willow is getting on we see pople evrey day in life and just never think of the storey about thear lives do we
    just becaus the boy/girl in the street is fat we think that thay just eat to much and never know the real storey we need moor pople like you to tell us the real sory of willow and her life the next parson i meet may be the frist normal parson that i have met in my life and iam 59 next please keep up the good work and tell us moor about willow i think you are a wonderfull person for telling us your storey
    thank you george xxxx