Why DO we make life so hard for disabled children (and their parents)?
FOUR weeks into my daughter’s full plaster cast for a triple break of the lower leg, I can honestly say I could not mother a disabled child. I am just not that good a mum. Friends tell me: ‘You can’t say that!’ Apparently if you have a baby, you accept whatever comes your way as part of life’s great adventure. And I get their whole ‘Kumbaya’ mindset, I really do.
I went through with my first pregnancy after being offered a termination at eight months; doctors were suspicious about the development of my baby, and genetic testing confirmed an abnormality.
I was warned that she might live for less than a day, or her organs might be on the outside of her body. But I decided I would love her no matter what, for as long as we had her.
And we’ve done much better than anyone expected. Aside from regular checks with a paediatrician, blood tests and some male volent looking kidney cysts that make me want to immediately surrender my own kidneys for her to use, we’ve been a great little team.
Today, as the mother of that child, who is now 13 and temporarily disabled, confined to a wheelchair, I can say with some authority that I am simply not up to the task.
I know now that parents of disabled children are truly next-level, in a league of their own.
I CAN ONLY CARE SO MUCH...
INDIA has a spiral break of the lower leg – as if you took the top and bottom of a plastic bottle, turned your hands in opposing directions and crunched everything in between. We were out as a family (my husband and three children all on their skateboards) when Indy tripped on a kerb and the bottom half of her leg went off at an angle it really shouldn’t have attempted.
She is now sporting a bright blue cast from the top of her hip to the bottom of her toes. For 12 weeks.
And after just four, my understanding of what it means to be the mother of a disabled child (albeit the disability is limited, temporary and, arguably, superficial) has been transformative.
I like to think of myself as fairly robust, able to handle a full-time job on the road, three children under 14 and my family’s washing and cleaning, and still meet my mum in town for a coffee once a week.
But now I wonder if I am really all that great at the mothering bit.
Or whether I am only good at it under certain terms – when my children are easy to look after.
Maybe my mothering is conditional, based on a tacit contract that exists only if my kids are able to use the toilet on their own and get dressed without shouting ‘Mum!’ every two minutes.
But my daughter in a cast suddenly fills every available space. She needs crutches passing, tooth- paste squeezing, hair washing and her foot scratching. I have come to realise that I am just not that good at caring this much. All the time.
LIFE IS OUT TO GRIND MY GEARS
WHEN we spent the weekend together out and about in her wheelchair, I realised how incredibly hard we all make life for disabled people and their carers.
Once you are the person pushing the chair of a child with one bright blue leg at a 90-degree angle, you realise pretty darned fast that disability is about way more than the accessibility of public transport.
It is almost as if life is out to grind your gears – on purpose. I now know that:
Pavements are traps. Once you are on, there is no way of getting off. Some disappear without warning. Most are actually built at an angle or camber, threatening to tip your chair and child into the road.
People are weird. On crowded pavements they see you coming – we’re hard to miss when a bright blue leg sticks four foot out in front of the chair – but rather than go around the back of you, they dart in front. And if you bash them, they complain.
Your child becomes an obstacle. One grown adult actually hurdled my daughter’s leg to get to the lunchtime meal-deal in M&S. It’s almost as if being in a chair transforms your living child into a piece of furniture.
Car drivers are a ******* s. All of them. They don’t stop to let you cross even when they see you are struggling, and pretend not to see you and your child with the bright blue leg, if it means they have to slow down.
You go home rather than attempt a public toilet. The thought of navigating a dirty bathroom with a wet floor when one leg has no shoe and a plaster cast is absorbent was too much for both of us.
Everything takes ages. I love words like pop, nip, run, whizz… all the speedy and fast-sounding verbs that make it clear you intend to be less than a second: I chuck
HER LEG BROKE IN A SPIRAL... LIKE A CRUSHED PLASTIC BOTTLE
SOMEONE HURDLED MY GIRL’S LEG TO GET TO AN M&S MEAL DEAL
in my dry cleaning, grab lunch and zip into the bank.
When you are pushing a wheelchair, none of these words applies. Your entire lexicon has to change. You shuffle into shops. You queue for a lift, wait hopefully for someone to hold a door and trawl pavements for a dropped kerb to use.
THANK GOD IT’S ONLY TEMPORARY... FOR ME
I KNOW my frustrations are temporary. And largely selfcentred. In order to get another perspective, I have been speaking to mums and dads of long-term disabled children.
I wondered if there was a coping strategy that comes into play that makes you a better carer, less impatient than me.
But all the parents I spoke to have the same frustrations, and are just
as forceful in their articulation, if not more so.
One wrote to me: ‘I’m the mother of a five-year-old girl who uses a wheelchair and has spina bifida.
‘There are so many things that hinder her – like people who park in front of dropped kerbs. Or people who park in disabled spaces.
‘Get out of the disabled parking space, you lazy idiot! Why would you ever think it is OK to park there if you have no badge, no matter how quick you are going to be?’
Others talk of the unkindness of strangers: ‘I’m mum to a specialneeds child. My son has severe autism; he’s also non-verbal with little understanding of the world. He’s in a special-needs pushchair so we get stared at.
‘Family days out are hardly a thing because my elder child gets embarrassed by his brother’s outbursts and the way people stare.’
And from this dad, a truth felt by so many: ‘I’m the father of a disabled child with severe epilepsy. Changing facilities for disabled children need to be a legal requirement. Why should you have to change any human being on a toilet floor?’
It really makes me wonder. We hear so much about bathrooms in regard to gender, but the issue of changing spaces for disabled children and their parents is conveniently pushed to the bottom of the discussion list.
It is not just that all these frustrations exist. It is the advance knowledge of them – knowing that people will stare or block your dropped kerb, or that you will have to wipe up other people’s urine before you can use the toilet. Knowing that it would be easier to stay home.
I was ignorant before, both of the obstacles we place in the path of wheelchairs and of my own failings as a mum should my child suddenly need more care than I had grown used to giving.
In truth, I don’t think there is such a thing as ‘the parent of a disabled child’. That is a lazy term.
They are parents, just like the rest of us – but battling with extraordinary frustrations and obstacles and the ignorance of a world that makes life in a wheelchair the opposite of easy.
I am not proud to admit that it has taken an accident and time pushing my own child in a wheelchair for me to really care.