As the dust settles

In case you haven’t heard, we had a general election here last week. The result was rather unexpected and, for many people, disappointing, angering or downright frightening.

The way I voted is not important (I don’t mean because there were only two parties that could have won in my seat and I voted for neither of them; I mean that’s not what this post is about). What I want to explore is why I found it so difficult to decide how to vote. I don’t remember having this problem when I was nineteen.

Granted, the stances of the main parties were probably more similar than they have ever been. Granted, there were a couple of parties I would rather eat a black banana than vote for (and I really dislike black bananas. Does that make me a natural UKIP supporter?). Granted, none of the parties had a set of policies I agreed with in full, or even in large part. But these probably apply to most of the population.

What interests me is the fact that the older I get, the less decided I become. Do I vote on principle? On policy? To send a message? To stop someone else from winning? Because I’ve always voted for that party? Do I choose the best party for my family? My country? The world? For the short term or the long term?

I don’t think it’s just that I’m exhausted from chasing a three year old around all day whilst at the same time bottle-feeding Benjamin for all his waking hours. I don’t think it’s that my mind is befuddled from watching CBeebies and playing “Mummies and Daddies” (although it is somewhat confusing when Jackie announces that “I am the Mummy; you, Mummy, are the Daddy; Benjy is the big sister; and Daddy … Daddy can be Auntie Katherine”).

I think it’s that – call me late to the party, but – I’m starting to learn that the world isn’t black and white. That pure ideology just doesn’t cut it when you’ve got children to think about, and special needs children in particular. Pragmatism starts to come into it. Caring starts to come into it. Right and wrong are not always right and wrong.

I know, for my three-year-old, I need to set boundaries and I need to be consistent. But that doesn’t mean I need to make snap judgements and stick to them even when they’re not working. I need to learn to say “I don’t know,” when I don’t know, or “I’ll think about that and get back to you,” and make sure I do think about it and I do get back to her, rather than making hasty decisions that we’ll all regret in the long run.

Benjamin, too, thrives best on familiarity and routine, but if the routine we’ve relied on starts failing for him then I need to work, gradually, towards a better one. Nothing stays the same forever. With Benjamin, nothing stays the same for more than a few days…

So, if circumstances change, I just need to explain: “it’s okay to watch a movie this afternoon because Mummy’s poorly.” “We can have ice cream for breakfast because it’s all we’ve got in the house…” “Mummy was wrong.” Perhaps it’s a shame we can’t do that with the government… or perhaps we should be grateful that we live in a democracy stable enough to keep the same government for five years, and work with them, against them, and around them to achieve what we need to happen.

Does this mean I won’t eventually turn into (more of a) bigoted, cantankerous old woman? Who knows? In the meantime, I hope my indecision doesn’t make life too confusing for my kids, because it sure as hell is confusing for me (who were all those people who voted Tory…?).

ELECTION

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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