When I first read the ‘blurb’ for this show, I thought ‘how can someone as financially privileged as Rosa Monkton pretend she understands the plight of someone who isn’t uber-rich?’
But, I had to take back that somewhat shallow thought when I watched this documentary. Money doesn’t take away heartbreak, and for Rosa, just as for the many other parents we saw in this film, little does.
All the parents featured in this film had disabled children, and from the get go, it was clear that Rosa’s empathy extends to far more than lip service.
However, what Rosa’s money can do is buy her physical help with her disabled child, but for those parents who aren’t wealthy, and they were in the majority in this film, that was what they needed most.
Rosa’s daughter Domenica has Down’s Syndrome and throughout the programme, Rosa spoke openly and with a touching honesty about the trials and tribulations of being the parent of a disabled child. And how devastating to your entire existence it can be.
We heard so many desperately sad stories last night, it’s hard to choose which was the most tragic, but one thing that all those who appeared had in common was that they are part of a group who are utterly marginalised by society.
While many of us are vociferous in our statements of support for disabled people, how many of us volunteer as respite carers? How many of us man helplines that might offer something as life-savingly simple as a sympathetic ear? And perhaps more importantly, how many of us would be willing to have an increase in our taxes or NI contributions to facilitate more help for these terribly vulnerable families?
And ultimately, that’s what this film came down to; highlighting a crippling lack of state funded help and the bureaucratic nightmare that it is to get any at all. It was horrifying to hear one mother tell how she’d had to provide “samples” to prove her child needs more than three nappies per day.
That was just one of many tales of bureaucracy gone mad and the legion of hoops that people must jump through to get any state help at all. And on hearing some of the many factors that go into making up the daily lives of parents and their disabled children, it became a good deal easier to understand how some parents can be driven to murder and suicide.
Monkton summed up that ‘tipping point’ by saying, “There are times when all the love you have is simply not enough.”
And though Rosa can make provision for the care of her daughter for the rest of her life, that hasn’t stopped her understanding the plight of, and campaigning tirelessly for, those who can’t do likewise. But the majority of this film was given over not to Rosa’s story but rather to those thousands who, day in day out, struggle to cope with too little money, too little time, too little energy and gaping holes in the state’s safety net.
It was a humbling experience to watch this documentary, and inevitably, it invoked a thanking-my-lucky-stars moment as I looked around my living room and saw my able bodied children.
Platitudes and words of admiration though are of little use to the people featured in this programme, nor the millions like them who weren’t. So the next time I hear about a hike in tax rates, I’ll try very hard to remember this film, and also hope that the extra revenue will go towards support for these unimaginably brave and stoic people who simply can’t be brave and stoic all the time.