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.