Shining a light on parenting in the dark

13 Jan 2017 Nick Garbutt    Last updated: 13 Jan 2017

Joe Kenny with his children

Guest writer Joe Kenny @j0ekenny shares the joys of parenting for people with sight loss, and charts the shortcomings of the health and social care system 

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

Without a doubt the births of my three kids were occasions I’ll hold deep down dear forever.  I remember as if it were yesterday that overwhelming indescribable feeling of wordless joy, relief and a hint of “What am I meant to do now, where’s the instructions.”

The moment the midwife handed me a towel-wrapped bundle of perfectness just minutes after she/he greeted the world, still brings a tear even now sitting here writing about it months on.

I did laugh however at the birth of Oisín 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, 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, come what may, whatever life throws, you will look after this mini person and never let harm come their way.

So why then doesn’t this society we all share and all have an equal stake in, have such a difficulty in remembering to include a parent with little or no sight?

The health care service, the education system and many other must do, need to, we’re watching you, 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 can’t see too well, isn’t even able to read a pregnancy test without sighted assistance - a job you’d agree, 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 the 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 are items of equipment that talk and do all sorts of things that can help with accessing daily tasks like this 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, the team of mid-wives and Health Visitors that 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.

Even the sight loss charity sector in Northern Ireland does little or nothing for parents with sight loss at the moment.

I believe it’s foolish to only blame a service that doesn’t provide.  I believe visually impaired parents are a silent group who, for the most part, are reluctant to speak out and say.  “I find this difficult” or “I can’t really get to that place,” or “I can’t find any information about local services in a way that helps me,” or “I’m struggling with getting my child to and from school.”

We can all relate to that feeling of not wanting to look like you can’t cope and 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 avail of 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?  Yes, it's all in tiny, low contrast print text – with pictures!!!

Come on, we’ve been having children from day zero and it amazes me that in these days of rights and even equal rights, whatever they are, I can honestly say that I’ve never felt more unequal than when engaging with health and social care services.

“Hello everyone and welcome to your parent-craft classes. We’ve lots of useful information for you parents to be.”

“Can I have that in braille or larger print?”

“ Uh, No.”

“Is it online?”

“ Uh, No, Yes, I don’t know I’ll hand write this link on a scrap of paper and you can lose it on the way home, that ok?”

“Is that film you’re showing there audio described?”

“Hmmm, uh, no I’m afraid not.”

“Can you email me or text me the details?”

“Em, what? Yes, but then I’ll not be working this clinic again and there’s no system to record your needs so a colleague might carry it on.”

Please don’t misunderstand me, the staff working at the front line of the health services I and my partner have encountered are wonderful.  More dedicated professional and compassionate men and women you could not hope to meet.

They too must know.  They see all sorts of people each and every day and so they see and hear what it’s like to not be able to access a support service that can’t cope with you if you find yourself outside the mainstream.  Is it the service managers? Is it the civil service powers that be or is it all of us that can’t or won’t stand up and tell it like it is 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 had nothing to do with braille or large print or my visual acuity.  My new born son or daughter never asked can I support myself or how much I earn or about DLA/PIP.  It’s quite simply nature at its mighty uncompromising best and 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, guess what, I’m a dad and I have little people that rely on me!

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 and availing of a service or two and suddenly I’m met with can’t dos and “well couldn’t someone at home read that to you.”

The governments make a lot of noise these days about the hallowed Disability Discrimination Act 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 and we aren’t there yet folks. It still isn’t working the way we’re led to believe.

In the early years I worried that 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.  It’s only when you really decide to stop listening to that and only worry about the here, the now and the bit you can control that your life becomes simpler.

Yes I do worry about the kids growing up and protecting them from cuts and scrapes and the ugly bits 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.

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!

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