Before motherhood beckoned, the world was just one railtrack away. Once I’d accepted that the best way to empower myself as a deaf person was to go freelance, I steamed ahead on the work train.
It wasn’t easy. First I had to find a field that could suit my access requirements. I started out as a fashion journalist, which by nature of its very own capriciousness felt like the most deaf-inaccessible job on the planet, for all sorts of reasons that I can explain at another time.
Capacity for ruthless self-editing aside, the only advantage that experience gave me was the growing realisation that I didn’t want to pretend to be someone that others wanted to associate themselves with, i.e. a cool pseudo-hearing person with a dyed fringe who laughed a lot. This being a time when the 1996 Disability Discrimination Act was in its infancy, it converged nicely with where I was in terms of having a deaf identity – in other words, a million miles away.
Luckily I had other interests to dip into as potential routes into work. I was passionate about visual art, writing and the media, and of course I had a keen interest in working within the Deaf Community, so ultimately it was a matter of consolidating all four into a portfolio career I could be proud of. And if a project didn’t work (which hardly if ever happened, I’m proud to say) I could do something else.
Of course people doubted me, many times. They didn’t believe that I could direct an ambitious short film, run the London Marathon, manage an arts organisation, edit a magazine, travel solo to New Zealand for a year, or get a MA in journalism – never mind editing a book. And every single time, I proved them wrong.
In fact, her disabilities are the least of my concerns. It is the bureaucracy – the form-filling, paperwork, services, appointments, correspondence and so on – that I am having to address on a daily basis that leave very little space in my head for artistic endeavours.
Last time I was interviewed for a job within the deaf and disability sector, I was surprised at how unprepared I was for it. It wasn’t that I lacked professional experience, commitment, drive or passion. Maybe complacency had something to do with it – after all, before I had Isobel I was at the top of my game, able to turn my hand to anything and make it work in my favour.
In retrospective, the key word I should have looked for was ‘perspective’. Since Isobel’s birth my perspective of disability had changed. I was no longer a perpetuator of the social model of disability, but a parent who had to go back to the very beginning in order to grieve for the child I should have had, just so I could move on again. The whole process took a long time – not least because I was also learning to adapt to the evolving nature of Isobel’s CP.
When I had that interview, I hadn’t yet identified in myself where I stopped being a parent to a disabled child and started working professionally in the disability sector – even though I had by then come to terms with my new home circumstances. That was what prevented me from getting a job that in another life, I could have done blindfolded.
It wasn’t the only job I was shortlisted for. In the last three years I have had a number of similarly unsuccessful interviews – and each time that happens I get disillusioned, because I know that if only I could find the space in my head to prepare in advance, I could have clinched it, but I’m never sure how.
Few understand where I’m coming from with that line – because there aren’t that many deaf parents of disabled children, let alone parents of disabled children.
But I am more than a deaf parent-carer. I still have in me a career woman fighting to get out, because of everything that I’ve achieved in the last 15 years, and the overwhelming feeling that my life’s passions still define me as a person – and those are best encapsulated in my career, more now than ever before, ironically because I am Isobel’s mum.
Today I am mentally, psychologically and physically ready to get back to work. Isobel will start going to PACE nursery without her parents two full days a week from September. She has already started mainstream nursery with her brother one afternoon a week (term-time only), and I plan to use direct payments for a part-time carer for her in the holidays, when Ben will still be in nursery, thus freeing up more work time for myself.
(Isobel’s nursery attendance in both mainstream and specialist settings is being funded by the local authority in lieu of her SEN statement, hence the 38 weeks rule. We pay for Ben’s place ourselves; because neither Miles nor I presently work 16 hours a week, we don’t get childcare tax credits, but at least we have the option of Ben attending nursery all year round.)
Miles was suddenly laid off in the last week of term. The school he worked at no longer had the capacity or the money to keep him on, so had to let him go. I’d admit candidly that the news was a relief, as he was travelling much too far for his job – over two hours on the train each way – and I didn’t feel that enough allowance was being made for his caring responsibilities. We simply didn’t need stress on top of the stress we were already having to address on a daily basis.
Now, we are both available for work, and Miles has already had three interviews so far for local teaching jobs. Opportunities for regular employment are rarer for me, given my particular expertise (a-ha! see what I did here?), but one thing I can do – like I have done for the best part of my 15 years as a professional – is create opportunities for myself, by returning to the one area that I do best: journalism.
So when’s the next train back to work?