While I have been refereeing disagreements between builders, drafting a gazillion PR plans, form-filling and wrestling with lycra suits (Orange's, not mine), an emergent voice from the hive of Working Mothers of a Disabled Child (WMOADC*, snappy, huh? Thanks Are you Kiddingney) has been gathering over something incredibly important.
Paid work. Employment. Self-employment. A job. Entrepreneurship. A career. That dreadful misnomer beloved by the likes of the Daily Fail, having it all.
Thanks to the strength of previous generations of women who have challenged the status quo, being a 'working mother' is more welcomed than sneered upon in today's society. Great strides have been taken, enabling women to take on the (sometimes farcical) juggling act that is bearing children and maintaining a career they either need, or desire, or both.
But under the surface of the fractured glass ceiling stands a group of women whose situations don't fit the typical mould. And for whom the system is still erecting barrier after barrier to the world of work. If you have a disabled child, the glass ceiling, or even the office door, can be all but inaccessible.
One might assume, when the barriers to work grow ever tougher to scale, that there is an agenda at play to actively discourage mothers of disabled children from contributing to the country's rather parched public coffers. As if once you bring a child with disabilities into the world you are cast aside into a net marked 'other', with an assumption that you will willingly renounce the normal things you once did, like going to work to earn a living, consigning them to the confines of the memory box.
Nobody without a gift for the occult can predict entirely what lies ahead in their life. I'm pretty sure I'm not alone in my teenage experience of sitting in the career advisor's office, sifting through lever arch files of (deathly dull) career profiles without one twinkling of contemplation for what might happen to my as-yet-undecided-upon career if I, at some unknown point in the future, gave birth to a child with disabilities.
As it turned out, I was lucky. I blundered, vaguely, into a career that now allows me to work in some pretty fanciful and flexible ways. Actually I was lucky twice over in that I also have the support of family. I have extra pairs of hands to take care of Orange and help manage the full-time workload of therapies, appointments and admin while I skip off in heels to bring home a little bacon and stimulate my mind away from a descent into dark chaos.
I need and want to work but it is my own, providential personal circumstances allowing this to happen. Should I have pursued a career that required me to be employed 9-5 5/7, or if I had been reliant on conventional childcare for Orange, this happy house of cards would never have made it above ground zero.
To give a little context to the uninitiated, a little over a year ago, I posted this little doodle. An idle hour spent trying to capture in illustrative form, the scope and scale of the demands of being a parent carer to an undiagnosed child.
The response was overwhelming. Words of compassion, sadness, anger, comradeship. It was all there. As Orange grows up it's becoming ever clearer that the demands of caring for him, while they change continually, will not lessen. If anything, they will probably grow.
Managing all this extra, unwished for but suddenly compulsory life 'stuff' that goes with the territory of disability, means that for many mothers of disabled children (and some dads, I haven't forgotten the dads), having a job or career can become an impossibility. For many, the barriers are insurmountable. The challenge is described with great eloquence, clarity and grace here, if I could command every politician in the land to read this blog and the links that follow, and act on it, I would.
There are, of course, WMOADCs* like me who have been able to cling on to a career through a chance amalgam of fortunate career choice, family help and support, the current health of their child and sheer, dogged determination. Not without challenge, guilt or mind-fogging exhaustion but cling on we do. We're the 16% versus the 60% of mothers of typically developing children who return to work post-baby. We are a distinct subcategory.
Our WMOADC* status is hard fought for and some careless critics may opine that we take on too much. But work we do. For financial security. For sanity. For independence. For normality.
Every mother of a disabled child should have the right to work, but if you've ever tried to find a nursery place for a child with severe epilepsy, or who is fed via tube, who can't move independently or who has a packed schedule of weekly appointments, you'll know that support from the system to do so is just not there. I give you some facts:
- Funding for one-to-one support in nursery, beyond the rudimentary 15 hours a week for 3+yr olds is absent. For children who can't eat, sit up or stay safe without constant adult support there is nothing, nada, unless a parent can fund full-time continuous one-to-one support in nursery themselves.
- Specialist nannies with experience of managing the needs of complex children are like gold dust. If you can find one, you'll need your very own gold reserves to cover the cost.
- There is no 'wrap around' care at special schools. Transport provided for disabled children to get to and from school will only collect and drop off to the child's home, so someone needs to be there to greet them. Oh, and school holiday care? As rare as hen's teeth.
- Carers allowance (embarrassingly pitiful as it is) goes poof into thin air the moment you earn more than basic pin money. AKA, the 'benefits trap'.
- Overloaded NHS and Local Authority services are not resourced or set up to fulfil the needs of a disabled child and accommodate the diaries of working parents. They're just not. Not just that, but the system expects and requires that a parent, with legal authority for the child, is present at any appointments where important decisions need to be made. Medical tests, for example.
- The employment world is still surprisingly hostile in many ways to working parents, even common or garden ones who are not shackled by the inconveniences of disability. Making work work, and making work pay is often a monumental challenge for parents, even without the complications thrown into the melee by disability. Present it with a disabled dependent and all of a sudden doors begin to close.
Work, all to often, just doesn't work. And the consequences, both private and public, are enormous. Would-be WMOADCs* are catapulted unceremoniously in their 'other' net into a downward spiral of home-bound benefit dependency, often against their will.
Of course, our current government (and supporting media) is quite happy to perpetuate the myth that 'people on benefits' are to be minimised and scorned, with no consideration for the life path that may have brought them there.
No consideration for the fact that there are mothers all over the country, unable to find a way to return to work after having a disabled child, for whom nursery places are unavailable, specialist nannies beyond the reach of all but the wealthiest, and employers unwilling or unsympathetic to accommodating their needs for flexibility. Mothers for whom work is, in all likelihood, essential to maintaining the family home. Paying a mortgage. Meeting the rent.
All too often, house keys are being handed over in exchange for a place on the council housing list. Debts accrued beyond means. Carers allowance stretched to feeding a family. Housing benefit claimed where once a tax-paying income was earned.
A little-talked about ever decreasing downward spiral. One that is real. Happening right now to families who previously may have sat comfortably in the top 10% of earners in the country. But our voices are largely falling on deaf ears with only the disability-friendly Guardian giving the issue any recent page space .
Us WMOADCs* and would-be WMOADCs* need an ambassador. A high-profile advocate to amplify our voice. We need a manifesto. For support. For common-sense. For change. For mental-health and social cohesion. For the greater economic good.
When I sat down to write this I couldn't think of a single politician in office who I would trust to take on this baton. Public life is currently found urgently wanting of figureheads with the clout, intelligence and lack of self-involved-puffery necessary to do this issue justice.
I'm sure some may disagree with me on this but in my mind there is, perhaps, only one potential advocate in public life with an inkling of WMOADC* reality. SamCam. Wife to a pretty unpopular PM she may be, but she has first-hand experience of life with a disabled child. She also has first-hand experience of being, for want of a better word, a 'career woman'. While her circumstances may be enormously privileged, she has the profile and sensitivity to take this issue on headfirst.
Alongside this blog post, I will be writing directly to Samantha Cameron to ask for her input and support. I will use this space to update on how this little line of enquiry goes. Perhaps I'm naive but I simply can't sit on my bottom and do nothing for the thousands of parent carers pushed aside by a system replete with holes and booby traps.
It doesn't have to be this way but won't change without input from influencers and policy makers willing to open their ears and think creatively.
In the meantime, I strongly encourage you to sit down with a large cup of tea (or perhaps gin) and read some of the blog posts my WMOADC* and would-be WMOADC* counterparts have penned.
Nice Work if You Can Get It by Are You Kiddingney
Dear Mr Gove (and other assorted pals) by Gingerbread & Sunshine
How Can Work, Work? by One Off Ordinary
Working...with a disabled child by It's Small's World
Work, Kids, Special Needs. Making it Fly by Rosy & Bo
A conversation has been started... The invisible women are stepping forward to centre stage. Watch this space.
* copyright Are You Kiddingney?