Flying Low

Readers, this summer my husband, the little ‘in and I decided to ‘staycate’ in Ireland. We spent a lovely week in Galway and then the two of us went north for a wedding towards the end of July. It’s been a nice summer, but now my husband wants to go abroad later in the year. And while I’d love to, part of me couldn’t be bothered with the rigmarole. Believe it or not, it has nothing to do with flying with our  five year old daughter – she’s more sensible than the two of us combined – but rather the worry about bringing the wheelchair with us.

Don’t bring the wheelchair, we’ve been told before. Rent one instead. Well that’s all well and good, but the truth is I like my wheelchair. I’m used to it, I personally don’t think it’s overly bulky or heavy (125kg),and it means in the airport I can take my time, if I check in early. Admittedly, however, I’ve only brought it once, when we went to Salou in 2015.

This was with Ryanair.

I am not exaggerating when I say I rang their customer service a thousand times to give the specifications of the wheelchair – the weight, make, dimensions and the fact that it had a dry-cell battery. Oh, and the fact that the back folded down. And it was, after all the phone-calls and emails, a hassle-free experience.

I have an Invacare Kite. The same wheelchair as my friend Dani McGovern.

Dani was in my house last Wednesday. She’d called over with her husband John and son Logan and we chatted about how excited she was about little Logan’s first time on the plane (they were going to Birmingham for the weekend with her sister, her brother and their kids). They’d only been away as a couple in Lanzarote  a few months before so they had no reason to believe there’d be any issues this time either.

But when I read Dani’s sister Sharon’s Facebook status yesterday afternoon, I immediately felt sick. The story, which Dani shared with the Irish Independent today, was that there was no issue with Dani’s flight over to Manchester, but on the way home she was asked for the voltage of her battery which she was unsure of (Neither of us have been asked this before. You’re normally asked if it’s a dry or wet cell battery. Wet cell = no flysies. Ours is dry cell). She was given the option of flying without the wheelchair (Dani can’t walk, unless she’s harbouring a secret I don’t know about) or getting off the plane.

Can you imagine being told that your legs were going to be amputated or somehow decommissioned? I’m talking shite now, aren’t I? That’s how much sense flying without Dani’s wheelchair made. So really she had no option but to disembark the flight, leaving her husband and her young son (who, like any two year old, went beserk without his mammy in his eyeline) and wait for the next flight, an hour later, where by some miraculous intervention her chair suddenly wasn’t a ticking time bomb and she could fly! Makes sense, doesn’t it? (Just like my handwriting).

What wasn’t detailed in the article was that this isn’t the first time Dani’s been messed around when flying. We went to Mallorca in 2007, Dani, John Paul and I, and we’d brought Dani’s manual chair for me because taxis over there don’t take electric wheelchairs of the size Dani’s was at the time so we thought we’d have her small one for taxis (and for me if I got tired). Good thing too, because when we landed, the cabin crew arrived with the manual chair but there was no sign of the electric one! Panic is not the word, lads – it was like we’d lost a limb. Eventually it reappeared on the carousel – how it got there I haven’t a clue. In the meantime. our accessible taxi had threatened to leave without Dani, in a foreign country where we knew no-one.

Dani never went to the media about that, and she was within her right to. But if she had not gone this time around she would’ve inadvertently been saying that this treatment is ok, that it was somehow her fault. But it isn’t, and was not.

In short. Dani is more than ‘a girl in a wheelchair’. She’s a college graduate, a woman who’s been living independently since she was nineteen, a woman who’s worked hard to prove herself in every way, and in spite of some negative running commentary is a fantastic wife, loving mother, loyal friend and passionate advocate. She certainly didn’t deserve that treatment.

And in telling her story, she is reminding us that none of us do.

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Facing my demons

It’s amazing what we as human beings are prepared to do to ourselves in order to avoid facing our feelings. It may be throwing ourselves into our work, in order to make every minute so busy with activity that we haven’t a moment to contemplate anything else, or it could be self-medication with whatever drink, drugs or substance we can lay our hands on. However, there comes a point where we can no longer do this and the only way to eradicate the demons that mercilessly control our lives is to face them and disempower them. And this is exactly what I am about to do.

Almost a year ago, my husband and I took part in a documentary ‘Somebody to Love’, which explored the challenges facing people with disabilities in finding love and forming romantic and sexual relationships. Partaking in that documentary was one of the most difficult things I have done in my life. The intimate nature of the recording and production meant that there was nowhere to hide from our feelings. We were in our own home,  our own environment, laying our private lives bare for Irish viewers to dissect.

Watching the documentary back, I can see myself trying to stifle my husband’s words, trying to stop him from saying something ‘stupid’ or ‘dangerous’. By ‘stupid’ and ‘dangerous’, I mean the truth or, more specifically, our truth. Our truth is that we felt frightened and alone. We felt that we constantly had to prove ourselves, that we  knew what we were doing, when in fact we did not have a clue. We’d never cared for a newborn before, and we were terrified, but we couldn’t let it show. In short, we were denied the right to be first time  parents: to cremate the bottle, to hold the baby upside down, to make mistakes.(By the way, I am neither condoning nor encouraging this behaviour. Please read the instruction manual that comes with your child).

One of the worst moments of my life was the day my husband and I were supposed to take Alison from the hospital, It was a Monday, and I was recovering marvellously from my section. I was feeding Alison well, and she was thriving. I was even walking a little using a walker, having had to use a wheelchair for the last three weeks of the pregnancy. However, I felt emotional and like shit; my section scar was sore, I was missing my own mother like crazy, and it felt like fluid was leaking from every bodily orifice. And this was the moment that the  head midwife, ward manager or whoever she was told me that they had ‘concerns’ about my ability to take care of my daughter. My heart broke. In that moment, it felt like Alison had died. I rang my husband and told him to take  Ali with him and leave me behind, because it was me, not him, that they had the problem with. Reading it now, it seems like the rants of a crazy person, but in that moment, it made sense. After numerous phone calls to social workers, public health nurses and Offaly CIL, we were allowed home, on the condition that a Public Health Nurse could come to our home every day and monitor our ‘progress’.

Nearly three years have passed , and now one of my best friends, who also has Cerebral Palsy, is excited about welcoming her new arrival in January. But after witnessing what  we contended with, she is starting to worry about how she will be perceived after the birth of her c child.. She will be a mother, not just an object of care, and it’s vital that she is enabled, without fear of judgement, to care for her child, It makes me furious to think that she, that we, have to think this way about the most precious event in any mother’s life, when children are being neglected by their parents every day.

and so I would urge her: If you by gross misfortune have to contend with these obstacles and attitudes, please have the courage to speak out.  This is only the second time I have done so, but I feel so much better. Only through our honesty can we truly help others and deconstruct the negative attitudes that have the power to destroy us.