Inspired by this recent post by the brilliant Penny Wincer and this old one from the equally marvellous Jess (whose Stories With Sam posts are always a considered, informative, honest look at parenthood and disability), I wanted to chime in with some more thoughts on this subject.
I haven’t worked since May 2014. In giving up my job, I am one the 84% – the staggeringly high proportion of mothers of disabled children who do not work, according to The Papworth Trust. And yet, bringing up a disabled child costs an average of three times more than raising a typical child. Coming at this from the inside, these figures stagger but don’t surprise me.
Reading the Trusts’ facts and figures sheet was pretty depressing. Disability within a household brings extra costs, yet is often a factor in lower incomes and greater poverty. There’s no escaping from the fact that statistically, disability negatively affects pretty much everything from education to work to transport to holidays. That’s not to say that all lives affected by disability are sad (if there’s one thing I can’t stand, it’s pity) but it can be tough, especially financially.
Interested in other people’s stories, I asked in my closed Facebook group why other mums had stopped working, what industries they had left and what struggles they faced. The same themes came up again and again…
- Appointments, appointments, appointments
I cannot emphasise how many appointments a child with a disability can face, particularly if they are also medically fragile.The first year is particularly full-on but the cycle continues week in, week out, year after year. These are a few of the professionals that might be involved: physiotherapists, occupational therapists, speech and language therapists, paediatricians, dietitians, neurologists, opthamologists, cardiologists, gastroenterologists, health visitors, orthotics, orthopaedic surgeons, GPs, psychologists. You’ll have seating clinics, feeding clinics, movement clinics, breathing clinics, swallow studies, x-rays… These will be a mix of weekly, fortnightly, monthly, biannually, yearly and totally out of the blue hospital admission for everything from a cold that quickly turns to pneumonia to a prolonged seizure.And while many of these refer to the most severely affected disabled children, every single child faces a fairly busy appointment schedule. Can you imagine trying to build even 2-3 of these into a working week, every week?
- Lack of flexibilty from employers
Many of the mums I asked had been denied flexible working – their employers were unable (or unwilling) to offer part-time positions, or job shares or work from home options. While there were some success stories (I’ll get to those later), there were plenty of others who just couldn’t get their employers to be flexible enough. And even when it was an option many mums came up against…
- Childcare issues
Choosing the perfect stranger to care for your children isn’t always easy, but when your child is not typical, it becomes so much harder to trust them to another person. For a child that requires extra care or 1:1 attention it is even harder for a mum to let go. You are acutely aware that inadequate care could be life-threatening for your kid, and this is the kind of underlying anxiety many mothers live with. Plus, there is definite prejudice against taking a disabled child on at some nurseries. Not only are there accessibility issues, there is a fear of caring for them and a lack of funds to provide equipment and support (I know councils and nurseries will say that’s not the case but I have SEEN it happen to friends). Not every setting is open to you, in the way it is for parents of neurotypical kids. And as they get bigger and older, it gets worse.
Personally, I felt that a nanny was our only option – a nursery or childminder just wouldn’t have coped with Ted as a baby. He was too unsettled and needed too much care. Plus I think he would have struggled in a busy place or room at nursery as too much noise was really difficult for him when he was small.
Specialist childcare doesn’t come cheap. Perhaps in agreeing to flexible working you have taken a lower position or agreed to a pay cut. Do you go back to work simply to spend all your wages on childcare? (Or even lose money for the privilege of retaining a career? That’s some pretty pricey respite.) If you don’t have family who can help, as we very luckily did, it can be pretty much impossible to even think about working.
- Lack of sleep
I am on my fifth year of broken sleep – welcome to motherhood! I know everyone goes through sleepless nights, but disabled children will often have severe sleep issues. They may sleep very little, or wake up multiple times a night taking hours to resettle or may just get up for the day at 2am. It’s like having a newborn in that respect. The sleep deprivation affects your brain, your ability to cope and your sanity. You can barely make a cup of tea, let alone create a powerpoint presentation for the company director or edit a TV programme or get a magazine to press on time or design a website or give someone the correct change or whatever it was you used to do for a job.
What are the answers? How can we get these skilled and valuable women back into work? Better and more plentiful childcare options would help. Better funding for 1:1 support and equipment in early years settings. Flexible careers – for mothers and fathers so they can share the appointment load – with remote working options, flexitime, more part-time roles and job shares. All mums should have the right and ability to work if they want to and shouldn’t have to take a lesser job or a pay cut for the chance to keep a career that they may have taken years to build up.
It’s easy to feel helpless against the machine of government sometimes. It’s all just so big and overwhelming. Laws are changed, new benefits brought in or scrapped, new rules about work or education or childcare or taxes being discussed all the time. The sheer complexities of it can make you feel as if you don’t matter, you aren’t being heard, or you’re being heard but no one’s acting on it. But there is revolution in the air and you DO matter. Your voice can be heard. A little like the Suffragettes, we need to band together to make an impact. Bang your drum and if others hear it and are encouraged to bang too, eventually the whole country will hear.
That’s why I think it’s important to keep talking about this big important stuff and if you can, join in with the internet’s finest campaginers like Mother Pukka or Pregnant Then Screwed or Doing It For The Kids or Make Motherhood Diverse. While each has a unique remit and not all are solely about work and motherhood, in the Venn diagram of ‘What needs to change for women in society in 2018’ there’s plenty of overlap. Just like there is plenty of need for change.
We all have our stories.
I’m intending to stand up and be heard this year – are you?!