We are the 57%

A few days ago, in a fit of frustration, I churned out a quick post about parking. Exciting, huh? But to my surprise it’s received over 11,000 views and generated a whole lot more Twitter traffic than I’ve ever had before.

So, what gives? Even posts I’ve sponsored on Facebook rarely get more than a few hundred views. Of all the posts I’ve written – on the difficulties of being undiagnosed, on the amazing work of children’s hospices, on the sanctity of human life, even on the importance of properly accessible toilets (which are certainly more scarce and arguably more important than parking bays), it’s the one on parking that’s sparked the most interest. I’m not bragging; I’m gutted.

So, what gives? Sure, in the UK we love our cars. We talk about the traffic almost as much as we talk about the weather. Victoria Coren Mitchell, presenter of Radio 4’s Women Talking About Cars, said the other day that for women, especially, cars represent a very special combination of both freedom and safety. For people with disabilities, cars probably mean even more in both those respects. Having only had one for six months, I love my Benjamin’s car, although I wish we didn’t have to use it so much. But I certainly don’t love parking – once I’ve got within a yard or two of the kerb I just want to shut the door and forget about it.

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If this was a disabled parking bay I guess I’d be tempted to park in it too…

So, what gives? Sure, in the UK we hate being told what to do – whether by a traffic warden, or Brussels, or a yellow line on the road and a blue badge in the window. But does that fully explain why I struck such a chord (or hit such a nerve, depending on your side of the debate) with a post about parking?

My theory is, it’s because parking is one of the few everyday battle lines between the disabled and the able. In fact, it’s one of the few situations in which disabled people are actually visible in our society. Yes, the able can complain about those of us ‘scrounging’ benefits. They can complain about us giving birth to children who will be nothing but a drain on society. They can complain about the effect inclusion has on the educational achievement of their mainstream children (hint: bugger all, apart from possibly making them less judgemental than their parents). But unless you actually know a person with a disability, you are unlikely to come up against these issues every day. Yet even if you don’t know a person with a disability, you probably park in a supermarket, school or public car park on a fairly regular basis.

And that’s the root of the problem really, isn’t it. Many people simply don’t know a person with a disability – or don’t realise they do. The Disabled Children’s Partnership, a coalition of charities campaigning to improve support for disabled children, young people and families, last week launched a new campaign called The Secret Life of Us. The aim of the campaign is to change the fact that an amazing 43% of the British public don’t know anyone who is disabled.

In parking, the 57% of us who have a disability, care for someone with a disability, or know someone with a disability, come directly up against the 43% who, through no fault of their own, don’t think they know anyone with a disability. The former know all too well the need for disabled bays, and cannot understand why anyone else would park in such spaces when they are so clearly needed. The latter cannot see the need for disabled bays, consider them an unearned privilege – particularly if we are not in a wheelchair, do not look disabled, or have children that are small enough to lift – and don’t see why they shouldn’t use them when it suits them.

So maybe this is where we should start. At the battle line. At one of the few places where the 57% become visible to the 43%. Disabled parking spaces are all about accessibility. Without accessibility it is very hard to have inclusion. Without inclusion it’s impossible to have integration. Without integration, it is extremely difficult to foster understanding. And without understanding, well why the hell shouldn’t I use that disabled parking space to save me a couple of minutes of my valuable time as a contributing member of society popping into the shop to get a pint of milk? It’s a vicious circle.

The Secret Life of Us campaign aims to break that circle, to help us – the 43% and the 57% – get to know one another. Now, the 43% can’t do anything about this – they don’t know we exist, remember. Their hands are tied. It’s up to us, the 57%, to start building awareness, to be brave and not shy away from sharing our stories and showing our lives in all their flaws and their beauty. Because everyone’s life – disabled or not – has flaws and it has beauty.

If you read my blog (thank you!) you’ll have a glimpse of that: stressful, sometimes traumatic, hard work, rewarding, ever-changing and featuring rather a lot of bodily fluids… But there’s a lot more I can do. Everyone in my community knows Benjamin, but not everyone in my community knows that I had anorexia in my twenties. I’m in awe of friends who are becoming more open about their mental health – in person and on social media. Social media certainly has a role to play here: the ease with which we can share The Secret Lives of Us – anonymously if we wish to – makes now an ideal time to bridge the gap between the 57% and the 43%.

I’m not saying we all need to go around shouting about our bowel movements and breakdowns and whether we’ve had breakfast all day long… but if the 57% can share a little more and the 43% can listen a little more, maybe we can all judge a little less. Because parking shouldn’t be a battle line. There shouldn’t be any everyday battle lines. ‘The disabled population is the world’s largest minority of which anyone can become a part at any time.’ We are the 57% – and one day you might be too.

If you would like to be involved in the Disabled Children’s Partnership, you can sign up at http://e-activist.com/ea-action/action?ea.client.id=78&ea.campaign.id=71897, follow it on Facebook and on Twitter. Share your stories, and read others, using the hashtag #SecretLifeofUs

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I’ll let you into a secret: sometimes our life is a bit dull #SecretLifeofUs

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To those who make our lives difficult … and those who make them better

It has not been a great week. Friday night I finally worked out (with the help of a head-torch and strong stomach) what had been keeping my five-year-old (and therefore the rest of the family) awake for large proportions of the last couple of nights: threadworms. Cue a weekend of swallowing foul-tasting medicine (okay, banana-tasting, but I don’t like bananas so it tasted pretty foul to me), nail-cutting, disinfecting, hoovering, and washing every damn sheet, towel, and pair of pants in the house.

About six loads into the approximately twenty loads of washing that needed doing (why my husband needs to keep six pairs of jeans on the go at the same time is beyond me), the trusty washing machine gave its last gasp and went to Hotpoint heaven. Well, you have to laugh don’t you? Off to the shopping centre for a new washing machine and some more pants.

If we huddle together maybe she won’t wash us? (I did)

The day the new washing machine was delivered, which also happened to be the day the temperature went down to -1 degrees outside and it snowed a blizzard, and the day Benjamin was back home from respite, our central heating thermostat decided the washing machine was having far too much fun up there and headed off to join her. Cue another sleepless night waiting up for the British Gas man and making sure Benjamin was not alternately freezing to death or catching fire due to the slightly rickety electric heater we set up in his room.

Perhaps surprisingly to those who know me, I actually did manage to stay positive through these tribulations, despite a niggling sinus infection and a baby who still decides to feed for five hours a night, because I know they were really nobody’s fault and I could make a plan to resolve them. I always feel better if I have a plan.

What does upset me are the things that I have no control over but somebody else does. The things that just aren’t fair. The things where people just don’t think. The things that make our life – already stressful, exhausting and expensive – just that little bit more difficult. The things that, on a good day, I can shrug off, but on a bad day tip me over the edge.

The neighbour who consistently parks her car overlapping our disabled space, sometimes so close that I can’t even open the boot, let alone open it wide enough to get a wheelchair in.

The parents without blue badges who fill the disabled parking spaces next to my daughter’s nursery, and those who do the same at my son’s even though it has an SN nursery attached so clearly they are going to be needed.

The parents who think it’s okay to leave their towels and clothes ‘bagging’ the only disabled changing cubicle at our local swimming pool while they shower, so I have to wait with a dripping, freezing five-year-old, or leave Benjamin outside the cubicle blocking the gangway, or confront them and risk their (sometimes vitriolic and frankly foul-mouthed) wrath on their return from the shower.

The medical secretaries who repeatedly ignore and refuse to return my worried calls.

The paper-pushers who drip-feed us form after form over week after week, while they mark Benjamin up against their secret criteria to decide whether he is entitled to medical support to enable him even to attend the nursery placement to which he is legally entitled.

The last straw…

But these are minor niggles, really, compared to the worms, ohmygod the worms those that many SN parents (and carers) face. Parents who feel compelled to take horribly drastic measures because they see no other way to get their child the support that he needs. Parents who have to go to court to get the right school, the right house, or the right care for their child. Parents who need physical protection from their own children. Parents who risk losing their homes because they cannot work to pay the mortgage. Parents who aren’t believed that their child has needs because they behave perfectly at school but let all their emotions out at home. Parents who have been allocated respite but have no one to provide it; parents who desperately need respite but have been refused it. Parents who have to fight every step of the way just to ensure their child is healthy, happy and included and their family stays together and has the energy to fight another day. And these parents still put a brave face on it and support each other because that’s what we do.

And they are minor niggles because, for every one of the people who make our lives difficult, there is always at least one who makes it easier.

The washing-machine man who fitted our new machine with a cheery smile and a knowing nod. The boiler-man who came out in the middle of the night and returned the next day with a brand new, all-singing all-dancing internet-enabled thermostat. The friends who volunteer to hold (and jiggle) Caitlin while I get Jackie changed after her swimming lesson, so that I have one less child to keep an eye on. The neighbours who look out for us and invite us over for coffee. The agency carers who come in on their day off and spend time encouraging Caitlin to walk and listening to Jackie chatter as they take care of Benjamin’s needs. The lady at the council who actually listened to our problems, understood, and promised to do something about them. The hospice staff who arranged a photographer to take some family photos for us, and the photographer who refused to charge for them.

New washing machine (and expert washing machine selector)

So we’ve got through this week with our humour (if not our wallets) intact. With a few more grey hairs and bigger bags under the eyes. There is still enough in our lives to smile at and plenty to laugh at. Often it’s not about money and limited resources, it’s just about thoughtfulness, consideration and an inclusive attitude. Just don’t mention the worms.

It takes a village…

I didn’t know we had crocuses in our garden. When we moved in, almost a year ago, they had already been supplanted by bluebells and Alchemilla. Now here they are in swathes, brightening the front garden, popping up boldly in my new veg patch, creeping into the lawn. And here we are, suddenly, a part of the community. As the people of the town emerge into the welcome sunshine, we emerge with them and begin to call this home.

It was a rash decision to come here. Letting our hearts rule our heads, we left practicality (a five-minute drive to the hospital, a two-minute walk to the station) for a house that leaked like a sieve but had ‘character,’ with a hallway too narrow for a wheelchair but a garden big enough to run around in, in a town we barely knew but would quickly come to love.

It was all new to me, born and bred in suburbia: row after row of boxy 1930s houses; people rushing past each other on their way to the big city; no particular pub to call a ‘local;’ only the dog-walkers sharing a smile as they pass. So I find it quite novel knowing the names of everyone in the street, stopping for a chat in the greengrocer, taking in each other’s bins; the centre of my world is now two minutes down the road.

Already everybody knows us – how could they not? I’m the girl in the tumbledown house with the heavily-laden buggy, the lively toddler and that poor, sweet disabled baby. But they also know everyone that’s ever lived in our house: “Oh yes, number one, that’s Alice Donaldson’s mother’s old place, two up from the Anderson’s and along from the family with the boat.” There is a sense of continuity here, of meaningful links between past, present and future.

Here, I feel we really might be able to join that continuum of human life I believe in (and have written about before). Here we can’t hide ourselves away, wallow in our own problems, despise people that stare at us in the supermarket and will never see us again. Here people genuinely want to get to know us; we are part of their lives now, all of us. Philosopher Professor Jeremy Waldron of New York University said, in a recent series of lectures at Edinburgh University, “the profoundly disabled are human persons too, endowed with human dignity … the relation is not straightforward, but just because it is complicated does not mean it is tenuous or ambiguous.” We don’t need to understand this, only to feel it, and here, where the pace of life is a little slower, such feeling seems to come naturally. His biggest problem, at least until I get around to cutting Benjy’s hair, is people mistaking him for a girl!

I’ve been along to our local church, St. Anne’s, a few times. Not seeking God, particularly, but tradition, familiarity, ritual and peace. I found those, and I found a welcome, not just to me, but to the whole family. I mentioned to the priest that we would like to arrange Benjamin’s long-overdue christening, and he was over-the-moon with excitement. With a small, typically retired congregation, they haven’t had a christening since last summer. Would we consider Easter Sunday, as is traditional? It would be the highlight of the church calendar. So, on Easter Day, that congregation will welcome Benjamin, and us with him, into the church and into this loving community.

At every turn we find not just smiles but support, not just curiosity but concern, not just compassion but care. It might have been rash but it was the right move. We have found the village that can raise our child.

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Ambition

They say what doesn’t kill you makes you stronger … or at least turns you into your mother. After growing up in a highly politicised family I thought I’d finally escaped all that campaigning nonsense. However, if having kids makes us think and care more deeply about the world they are growing up in, and the world they will inherit, then having a particularly vulnerable child makes those feelings all the more profound.

One of my earlier posts has today been republished by the disability charity Scope as part of its 100 stories in 100 days campaign. Encouraged by Scope to seek my local parliamentary candidates’ views on what I’d written, I had to challenge myself, first, to think: what do I actually want to achieve through this? What do I want to change? And I found my ambitions have broadened even since I first wrote that post six months ago.

I still want to try and show that having a disabled child is not the end of the world. That the choice is not, as (perhaps unintentionally) presented to us, between Benjamin’s life and the quality of life of the rest of the family. Every new child changes the dynamics of their family completely the moment they enter the world. We will never know what life would have been like without Benjamin, or with a different child in his place, nor would I want to.

Sometimes I wish we’d never been given our choice. I live every day with the guilt that I have imposed the “burden” (whatever that may mean) of Benjamin upon my family. Because, whatever the positives, at some level I have made life more difficult for us in today’s world.

At the same time, knowing something of his condition before birth has been a great blessing for Benjy: it has meant the right healthcare, education and support has been there for him, and for us, right from the very start. Many are not so fortunate. Many have to fight for the recognition that their child has a special need. Then they have to fight again for the treatment, funding, equipment and support they need. They even have to fight to find out what they need, what is available, and what they are entitled to, because there is no formal mechanism for letting them know. There has to be a better way.

Anyway, what I mean, what I feel strongly is, that whether or not we actively choose this path, families who find themselves with a disabled child should not be made to feel that it is a life sentence. Yes, we need support, of many kinds. But we also need to be seen as a part of society, not as second-class citizens. People shouldn’t be crossing the street because they don’t know how to look at us or talk to us. Politicians should not be avoiding the issue. Humanity is simply a continuum of ability, after all.

I take Benjamin to two wonderful groups that I am lucky enough to have nearby. One is a small playgroup for special needs children, where the kids get to do developmentally-appropriate activities and the parents get to support one another, share information and swap tips. It’s invaluable. The other is a sensory and communication class, for neurotypical children, but run by a lady who is open-minded enough to let us join in, and even to let us stay way beyond the normal age if it is still proving beneficial to Benjamin. Although in some ways it’s hard to watch the other children grow, develop and move on, I’m sure this class also is mutually beneficial. The “normal” kids get to learn, from an early age, that disability is normal. And we, at least for an hour or so, get to feel part of the real world.

I guess I’m not really straying very far from my roots. I was brought up to believe that society should care for and protect those who can’t care for themselves, whether that’s a disabled person, an unborn baby, the elderly or the sick, and whether that care is provided through formal laws and taxes, charities, or simple community spirit. I’m not au fait with the economics, the laws, or the politics, but I do know that attitudes have got to change. It’s not only about accessibility; it’s also about acceptance, as a normal part of society, in which everyone cares for each other. I’m not saying I’m going to turn into an activist overnight, but I am going to start asking any policy-makers and opinion-makers I might meet, how they intend to achieve that.

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The invisible line

When you get pregnant, suddenly – before you even begin to show – you notice bumps everywhere. It seems the whole world is expecting. Buggies become ubiquitous; you start checking them out, eyeing up the features that would suit your lifestyle (or the lifestyle you think you’ll have). When you become the parent of a disabled child, suddenly you realise disability, too, is everywhere.

In the past, though I never bothered to analyse it, there was, somewhere in my consciousness, a line dividing able and disabled, walking and wheelchair-bound, those who run marathons for charity and those for whom charity marathons are run. In short, I’m ashamed to say, us and them. Even in writing this blog, I imagined it to be from one “normal person” to another, describing the “novel” experience of living with a disabled child (instead, unsurprisingly, many of my readers – and most insightful commentators – could themselves be described as disabled. I am immensely grateful to them and thankful not to have alienated them (yet) in my narrow-mindedness). Now, I don’t know where to draw that line. I don’t even know which side of it I would put myself! Of course there is no such line. We’re all part of a continuum, part of humanity in all its rich, flawed beauty.

I’ve been to a few “special needs groups” with my son. In a way they’re brilliant – a chance to provide the stimulation he needs and to interact with parents with similar experiences in a setting that I know will be accepting, non-judgmental. In another way they’re horrifying, the first step in shutting our kids off from the rest of the world, in a place with different needs and expectations, a separate caste. This despite the fact that the physical, mental and social abilities, not to mention the characters and interests, of the people within them, are of course hugely diverse.

It’s the policy of my local authority to try to educate special needs children, as far as possible, in mainstream establishments. I don’t know if this will work out for my son. I don’t even know if that’s what I want. Would I rather he continued to be sectioned off with others “like him”? Or that he became the odd one out in a pool of “normal” kids? That he received personalised, specialised care or that he learned to cope in a world built for those closer to the other end of the spectrum?

A friend recently directed me to a great article by Ian Birrell (http://www.theguardian.com/commentisfree/2014/aug/08/ny-disabled-daughter-genetic-wonderland-prejudice-medical-advance), in which he discusses society’s “failure to come to terms with disability … the shameful exclusion of so many people who could contribute so much to communities.” My hope is that by the time my son goes to school, our society – myself included – will be more aware, more accessible to and more accepting of the diversity I’m only starting to appreciate. If you see me staring now at a wheelchair now, I’m – honestly – not gawping, I’m just checking out your wheels

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