Birthdays are tough as the parent of a child born prematurely. As you move forward through the years, you are thankful that you and your child are still here, even at the same time that you are thrust back to the day of their untimely arrival and to the hopes, fears, smells and noises of the alien environment of the NICU. To say you feel mixed emotions does not to justice to the complex web of feelings you have to deal with.
When your child is, like Boo, one who will never outgrow their prematurity, when their early arrival led to complications that will affect them for their whole lives, these feelings are mixed with others too: maybe grief, maybe anger or sadness.
But if you are reading this as the parent of a premature baby or a child born with disabilities, let me tell you what many have told me in the past: birthdays get easier. I didn’t believe these people when they told me. But they were right. They do. Don’t despair. Things get better. I promise.
Boo’s second birthday, though, was hard. It was so difficult to remember all he and we had been through. It was hard to see how different he was from his peers; how hard his future looked set to be. But we celebrated anyway partly because we wanted to and because you have to right? And truth be told, we had a lovely day, a pretty typical (note: I can’t use the word ‘normal’ now ever) toddler birthday even though ours couldn’t toddle and likely never will without aids that are the size of a studio flat.
Until, that is, the cake was eaten, the wrapping paper was in the recycling bin and the presents temporarily stored and I sat down with a glass of wine and my lap top. Not to work, as I usually do. To apply for our son’s blue badge so we could park in disabled spaces.
I had been told some weeks before and not very politely by our local blue badge office that we were unlikely to get one because Boo was too young, even though the government website indicates that children from the age of 2 with significant health needs and disabilities are eligible to apply to this scheme. (Apparently if Boo was a ‘normal two year old, he would likely need to be carried in and out of the car anyway’. Hmmm come try and carry Boo, I thought. I’ll show you what carrying is. And stop using the ‘n’ word, OK?) I applied regardless.
Boo had just received a wheelchair buggy and it was enormous. We needed space to get it round the car and put him in it safely. Boo may have born prematurely, but tell his body that. He has always been tall. Very tall. And while his weight is perfectly respectable rather than overly impressive, he can’t hold any of it himself. He could not and still cannot sit independently. Pick him up and he is as unwieldy as a sack of potatoes. No: a sack of potatoes where the seams have split and things are threatening to fall out of the sides. And that’s only when he’s not stiff as the proverbial board. Carrying Boo is a hold your breath kind of activity and not only because you are trying to engage that core you keep working on for fear that one day you will not be strong enough to carry your child. You hold your breath in case he or you fall as he goes into extension or he loses all his muscle tone and dribbles to the floor like jelly.
It was clear to me and to the healthcare professionals who had persuaded me to do the application that we needed a blue badge. We needed the ability to open his car door to 90 degrees. We needed the space for safety. His safety. I submitted all the medical evidence, lamented that this was how I was spending the evening of my son’s second birthday and hoped for the best. We got a blue badge, although only for a year when, we were told, we would have to reapply, because everyone knows that severe quadriplegic cerebral palsy can just vanish overnight when you hit 36 months. I reapplied just before his third birthday and we received another one for him for a few more years.
The blue badge makes a huge difference to our lives. I won’t lie, the financial benefits are considerable. If I am lucky enough to get in one of the free disabled spaces at our local hospital where Boo has so many appointments, that can save us between twenty to forty pounds of parking fees every month. But to be honest, for us, the safety issues are paramount. Being near where we need to get to with huge bits of equipment. Being able to get Boo out of the car safely. Being able to do so without putting any more pressure on my struggling back with its bulging disc than I have to.
But let me also say this, because a couple of very awkward and upsetting incidents recently have made me feel like I need to say this publicly: I get NO pleasure out of having to have a blue badge for my son. I would give every penny and every limb and vital organ I have for my child not to be disabled. I can’t believe I even have to say this.
And yet, since having the blue badge we have been challenged about using it on more than one occasion. The problem lies, like most problems, in ignorance. When you say blue badge holder, many people obviously have a set vision in their head that is sometimes very far from reality.
Not all drivers of cars with blue badge holders in them are elderly. Not all blue badge holders drive. My son, for instance, will likely never be able to drive himself anywhere. But people see me, a just about on the right side of forty-year-old and see me pull into a disabled space and think I’m a lazy person who can’t be bothered to walk more than five metres to the shops. Or they momentarily clock the kids in the back and think I’m one of those people who thinks parent and child spaces and disabled spaces are the same things. (Do such people really exist?)
We are frequently stared at when we pull into blue badge spaces and usually anxiously pull out the blue badge and clock from the door bin before entering car parks to wave them in the faces of the disbelieving. On more than one occasion, this has not been enough.
A few months ago, while on a trip with relatives to a National Trust property, a driver who pulled into the space next to us said very loudly: ‘Parents are so ****ing inconsiderate when they think because they have a buggy they can park anywhere. Don’t they know these spaces are for people who are really disabled?’ My cheeks grew red and hot and the tears burned behind my eyes as I worked out what to say. Thankfully, I didn’t need to because my outraged sister replied instantly: ‘My nephew [who we hadn’t yet got out got out of the car] has quadriplegic cerebral palsy. How much more disabled would you like him to be to park here?’
Just a few weeks ago, another person, in the most unlikely place you could imagine, banged (yes: banged) on our car window as I parked in a disabled space, and shouted in a tone so loud and hostile it caused both of the Boos to cry that we couldn’t park there and how selfish we were. When we showed our blue badge the individual became flustered and embarrassed but continued with a tirade of abuse about my parking ability. I may not be Louis Hamilton, but I was parked well within all the lines of the space as marked out.
Blue badge holders and people like me who drive around a blue badge holder (the badge is Boo’s not mine and I would NEVER park in a disabled space if he weren’t with me in the car) know better than any how much spaces designed for disabled people are abused by those who are ‘running late’, ‘just getting dry cleaning’ or ‘buying fags’ or ‘the paper’. Such abuses of a facility that materially benefits people in a way non-disabled people may well struggle to understand are worse than thoughtless.
But let me be clear: no one has the right to make judgements about whether a car pulling into a disabled space has a right to be there or not until they have waited to see the blue badge pulled out. Many blue badge holders are not drivers but passengers who can’t immediately be seen through a long stare through a windscreen. If either of the women who have shouted at us recently had taken one look at Boo it would have dispelled any suspicions they had about whether we ‘deserve’ his blue badge or not. But this is also beside the point. Lots of disabilities are not immediately visible. This doesn’t make them any less real.
The occasions when we have been challenged about using Boo’s blue badge have been awful. They have been awful because no one likes to be told off in a public place, not least when you’ve done nothing wrong. They are awful because you are being treated like one of the thoughtless people who abuse blue badge spaces and make you and your child’s life harder (‘oh sorry, I was only getting my lottery ticket’).
Mostly, in my experience, they are awful because they turn the most simple things, like going to buy milk, going on a family day out, or return a book to your local library into another thing in your life about disability. They remind you that there is no going back. That your family is different. That people don’t understand.
No one wants people to stop the abuse of disabled parking spaces more than people like us, but you know what? Why not leave it to the traffic attendants to sort out? Blue badges are not your problem.
And one final thing: they are not our privilege either. I cried throughout the entire duration of the time it took me to fill out the online application and payment for Boo’s blue badge when I did it on the night of his second birthday and I wept more tears when I had to renew it 11 months later. I would give anything for us not to have that bit of blue card in my car, even though we need it for Boo’s safety and our own. Treating us as if we are lucky to have a blue badge is almost as awful as accusing us of abusing a blue badge space when we are entitled to use it.