“What do you mean I’ve got poo on my forehead?”

Post date: 
Thursday, 1 June 2017
Joe with his three kids

Joe Kenny, who works at RNIB Northern Ireland and is a father of three, shares the joys of parenting with sight loss and the shortcomings of the health and social care system.

Without a doubt, the births of my three kids were occasions I’ll hold dear forever.
 
I remember them as if it were yesterday… that overwhelming, indescribable feeling of wordless joy, relief and a hint of “What am I meant to do now?” and “Where’s the instructions?” The moment the midwife handed me a towel-wrapped bundle of perfectness just minutes after they greeted the world, still brings a tear to my eye even now sitting here writing about it.
 

I did laugh however at the birth of Oisin, the most recent, when the midwife said “It’s a boy! I think I’ll cut the cord if you don’t mind – in case you cut the wrong dangly bit.”

The memories of life changing moments like those are somehow more colourful and more vivid than any other, and still loaded with the emotions I first felt even though time has done its best to march on. I think in that moment when your son or daughter is passed to you, you make a vow that whatever life throws, you will look after this mini person and never let harm come their way.
 

So then why does this society we all share and have an “equal” stake in, have such difficulty remembering to include a blind or partially sighted parent?

 
The health care service, the education system, and many other facets of society, fail so desperately at keeping their end of the bargain to me, a blind parent or indeed any parent with less than perfect vision.
 
It astounds me that here we are in 2017 and still, a woman who’s blind or partially sighted, isn’t even able to read a pregnancy test without sighted assistance – a job you’d agree, is best done in private and made even more tricky if your partner can’t see either. What about when I have to give one of my kid's medicine? Try measuring out 2.5ml with your eyes closed and knowing that getting it wrong could be dangerous. What about making up formula milk for baby feeds? I’ve had to devise an overly complicated system and even then I’m never 100 per cent sure it’s spot on.
 
Yes, I know there is equipment that talks and does all sorts of things that can help with accessing daily tasks, but who promotes them to a new parent? They’re usually expensive and quite often aren’t as reliable as a mainstream equivalent. And above all else, the post-birth health and social care system, and the team of mid-wives and healthcare visitors who are there to be a support network, know nothing of these or the thousand other little ways you have to learn to cope with parental tasks when you can’t see.
 
I believe parents with sight loss are a silent group who, for the most part, are reluctant to speak out and say “I’m finding this difficult”, “I can’t find any information about local services that can help me” or “I’m struggling to get my child to and from school”. We can all relate to that feeling of not wanting to look like you can’t cope and understand there’s pressure on parents to be seen to be breezing through motherhood or fatherhood for fear of the dreaded tut-tutting eye of scrutiny.
 
To create a life doesn’t take sight, to feed your baby doesn’t take sight, to love and care for your son or daughter doesn’t take sight, but to use and benefit from mainstream support services does – and you’d better get used to it, because there’s an entire rain forest of health care and safe-guarding literature coming your way. And guess what? It's all in tiny, low contrast print text with pictures!
 

It amazes me that in these days of “equal” rights, whatever that means, I can honestly say that I’ve never felt more unequal than when engaging with health and social care services.

Please don’t misunderstand me, the staff working at the front line of the health services my partner and I have personally encountered are wonderful – the most dedicated and compassionate professionals you could hope to meet, but even they see all sorts of people every day who can’t access the specialist support service they need. Is it the service managers? Is it the civil service powers? Or is it all of us blind and partially sighted parents who can’t or won’t stand up and just say enough is enough?
 
The beauty of it all is that, to bring a new life in to the world and be present as he or she takes their first breath, and that wash of emotion and conviction, has nothing to do with braille, large print or my visual acuity. It’s quite simply nature at its mighty and uncompromising best. But here I am a blind man, who apologises to empty seats on the bus, who once went out of the house with two odd shoes on and quite often opens multiple tins of chopped tomatoes in search of the one elusive tin of beans left in the cupboard. And I’m a dad.
 
Why is it that I only feel inadequate when I encounter “the system”? Surely there’s a lesson here. I’m blind, there’s no getting away from that, but caring for and communicating with my children isn’t a problem when it’s just us. Try reaching out to a service or two, and suddenly I’m met with “can’t dos" and “couldn’t someone at home read that to you?”
 
The government makes a lot of noise these days about the hallowed Disability Discrimination Act (DDA) and equal access for all. It’s a joke in my opinion. It’s a form of words used as a tick box and a way of securing funding. It takes more than saying the letters DDA in a meeting – it takes an entire attitude change and re-education of service providers and those with the country’s purse strings knotted tightly in their hands.
 

In the early years of fatherhood, I worried I wouldn’t be able to cope with the basic stuff or that my kids would somehow go without because I was blind. Of course, I now know this to be nonsense, but every day we’re surrounded by reminders of what we should be doing with our kids according to popular culture and the unending bombardment of things to compare our lives to.

Yes I do worry about the kids growing up and protecting them from cuts and scrapes of life or making sure they receive everything they need to reach their potential. And yes I’m not sure how I’m going to ward off the marauding mob of work shy, paedophilic, bullies with drug dealing tendencies that are surely lurking around the corner any day now.
 
But it's only when you decide to stop listening to everyone else and worry about the here and now that you can control, that life becomes simpler.
 
Anyway I must go, Oisín needs changing. My partner is fed up with telling me to remember to switch on the bedroom light for the baby at night when I’m changing him – I just tell her it’s character building and he’ll thank me when he’s older. His hearing will be just great!
 
This article originally appeared on the ScopeNI website
 

More you might like

Sign up to receive Connect eNews every two weeks by becoming a member of our growing community of people affected by sight loss