Jumping back in

When we lost Benji two years ago, I lost even more than my beautiful, loving, brave and patient child, my daughters’ brother and confidante, my teacher and guide in a world suddenly changed.

I lost a community of other families with complex needs, with undiagnosed conditions, of self-advocates passionate about disability rights. I lost a role – I was still a mother to his two amazing sisters (and therefore of course cook, cleaner, chauffeur, peacemaker and chief nagger), but I was no longer nurse, lawyer, paramedic, secretary, pharmacist, physio, advocate, accountant or campaigner. I lost my justification, my legitimacy, for fighting for Changing Places toilets, for inclusive education, for wheelchair-accessible beaches and the rest. I almost didn’t know who I was any more.

In those old roles, I started to feel like an interfering busybody: how would I have reacted if someone with no lived experience of disability started telling me how to look after my son? To feel like an outsider: who am I to comment on the Facebook posts of other families living with undiagnosed conditions? To feel like a fraud: do I really know anything about caring for a child with additional support needs anyway?

At the same time, I also felt guilty. During Benji’s life I accumulated quite a knowledge of medical jargon, drugs and technologies, of the systems disabled people have to work with and fight against. I gained experience of pushing for the rights of my son and others like him. I developed a drive to see a more accessible, inclusive and equitable society – not just for him but for us all. All the time and training that has been invested in me – through the variously gentle and challenging (sometimes both) guidance of professionals, self-advocates, and parents further down the line than me; through my funded place on the Partners in Policymaking programme; all the books I’d bought and webinars I’d attended – was I just going to let all that go to waste?

Outside of our little bubble of grief, none of the injustices in our society have gone away – if anything they have intensified. Clinically vulnerable people are still at risk every time they leave their homes now the rest of the population see covid as a thing of the past. Disabled people reliant upon energy-guzzling equipment are increasingly cutting out meals and turning off their heating to pay for it, while local councils send the bailiffs in to recoup the cost of essential social care. Climate change impacts are accelerating, with disabled people around the world among the first to suffer the consequences. Disabled parking spaces have been stripped away in the name of ‘spaces for people’. Families for whom school is failing are now threatened with having their child benefit cut. Our playparks are still inaccessible to wheelchair-users, leaving children segregated as they play …

… And so on and so on. But perhaps I have a few of the tools, and a little of the energy, to take some small steps towards raising awareness of, and even battling, some of these issues.

I know I’ve been out of the loop for a while: focusing on my daughters a little more, exploring my own neurotype, tinkering with other projects, working out what I really feel and where I might fit – and now, if you’ll have me, I think I might be ready to jump back in. Because this week I’m especially excited to have been invited to play a small role using some of my experience and my passion working with the wonderful Dunbar ASN Community on their campaigns, and with their families dealing with complex medical needs.

So I’m hugely grateful to the friends who reassure me that I’m not being a nosy parker (well, not in this respect). Who show me that an ally is a valued and useful thing to be. Who remind me that they continue to remember Benji and all that he showed and taught us. Who understand why I don’t give a simple answer when I’m asked how many children I have – because his life mattered, continues to matter, and can help make a difference, for all those left behind.