Trailblazing

So, I realise I bang on about inclusion rather a lot. That makes me both a zealot, and a hypocrite, because my son attends a specialist provision rather than the local primary school that his sisters go to.

There are several reasons Benjamin still attends the wonderful, well-equipped, superbly-staffed specialist provision at which he started before I knew any better. It’s partly because he doesn’t cope too well with change and for that reason I don’t want to move him until he has to transition to secondary school anyway (at which point I fully intend him to go to his local mainstream school, if he likes it). It’s partly because I am both gutless and proud, and don’t want people to see me change my mind and start asking for the opposite of what I fought for three years ago. And it’s partly because children with additional support needs in the UK (even in Scotland) are, at present, caught between a rock and a hard place.

Even in Scotland, where the “presumption of mainstream” is enshrined in law, the fact is that the majority of the funding and support available for these children is concentrated in special schools, and it’s not easy to shift it. It takes a battle against the prevailing orthodoxy for our children to receive the support they need to flourish in a mainstream setting, so parents feel they have to choose between meeting their children’s academic, healthcare, and sometimes safeguarding needs, and allowing them the opportunity to make lasting relationships with their peers in their local community.

This last is why, I think, every time I post about full inclusion, I get comments along the lines of “I honestly do think inclusion is a good thing … BUT … not for my child.” “There simply isn’t a ‘one-size-fits-all.’” “Some people’s needs are best met outside the mainstream.” And so on. It’s why specialist settings are so often over-subscribed; why parents have to “fight” to get it inscribed in their EHCP or IEP or CSP that only a specialist provision will do, lest they fall between the cracks and end up, stranded, in mainstream.

The fact is, making change is tough. Change doesn’t happen overnight. Change is messy and piecemeal. I hesitate to sound all Brexity here, but it may get worse before it gets better. If we’re going to break the cycle of segregation – if we’re going to nurture a generation of children who accept one another whatever their protected characteristics – we are going to have to put our kids on the frontline during that change, and why should we? Why should my precious boy risk being poorly-supported in a mainstream setting while the bulk of the support he needs is channelled into specialist provisions? Why should he wait for the OTs and physio to squeeze out time in their busy schedules to see him, when they can more efficiently support all the children that are on a single site at the other end of the authority? Why should his ability to communicate be limited by the equipment that can be spared from that “one stop shop” of an institution?

If it comes to that, why should I go grovelling to swimming pools and shopping centres, begging for fully-accessible toilets, when I can still lift my child (just) onto a baby-changing table without it (or me) collapsing? Why should I swallow my anxiety pills and call out the person half-dozen people parked in a disabled bay without a blue badge, when I am not even using my car that day? Why should I face the wrath of the do-gooders every time I point out how discriminating and stigmatising “autism hours” and “purple Tuesday” are?

If it comes to that, why should I give up bacon sandwiches while others in our community still see a steak as the best way to start the weekend? Why should my children do without exotic holidays when their grandparents continue to fly around the globe at every opportunity? Why should we spend our savings insulating our house when the shops on the High Street still have their heating on and their doors open in midwinter? Why should I keep trying to source cloth nappies to fit a six-year-old when most parents of babies are content to just keep on covering the planet in pooey plastic waste? What would be big lifestyle changes for us will make no difference on a global scale when presidents and prime ministers wage war over oil-fields and let their forests burn.

Why?

Because, to misquote, “If not now, when?” and “If not me, who?”

Because the correct question to ask is not, “Why me?” but “Why not me?”

Because somebody has to make the first move.

When I enrolled on the Partners in Policymaking course last year (applications are open for this years’ intake; get yours in now!) I hoped it would teach me how to make a difference in the world. What it taught me was that changing the world has to start with changing our own attitudes. It’s not enough to talk about how things should be, no matter how persuasive I am; I need to lead by example. Whether people follow or not.

At work, I am playing a small part in a process aiming to improve gender equality in UK higher education and research institutions. It’s called Athena SWAN (Scientific Women’s Academic Network; I don’t know where the Athena bit comes from). I find their structure helpful here: to get a Bronze award in the Athena SWAN charter, our institution must be able to recognise areas in which we could make improvements towards gender equality. To get a Silver award, we must evidence actions that have had impact to improve gender equality. But to get Gold, we must do all of that and we must be “beacons … [who] champion and promote good practice in the wider community.”

I don’t want to be a beacon – I’m not a strong personality, I don’t relish the limelight, and I’m not good at public speaking; I’m scared. I don’t want to make a fuss and I don’t want to put my family in the line of fire. Plus I get hot and flustered when put on the spot. But, I care about the world my children are growing up in right now and the one they will have to survive in the future. So better hot, flustered, and making a difference, than cool, calm and collected, until it’s too late.