Living a 'normal' life can prove difficult and expensive

Legislation and awareness of disability issues are both lacking in this State and can make for a difficult life when you live with a person with disability, writes Marianne O'Malley

It's an expensive business trying to live a "normal" life with a person with disability. My 21-year-old son, Eoin, has severe and multiple disabilities and uses a powered electric wheelchair, whenever our environment allows him that freedom. He's also an inquisitive and sociable young man who dislikes being housebound - and he's extremely clear and vocal about that.

Consequently, having a wheelchair accessible van is an essential requirement for me, despite being someone whose financial circumstances would ordinarily dictate a second-hand bicycle.

We've learned over the years that the old adage "you get what you pay for" is very true. And what we need is space and access. A €5 coffee break turns into a €20 gastronomic experience when every ordinary café is crammed with tables and the only option is spacious five-star luxury. Self-service queues are a nightmare, and a lot of wheelchair accessible lavatories are like the Dublin Port tunnel - too small for their designated purpose.

Eoin is also a passionate holidaymaker. Nothing grabs his interest and attention like a planned weekend away or a longer more adventurous trip. In August, when his centre closes for the summer holidays and he's home full-time, this passion reaches a crescendo and has to be sated.

From the moment our bags are packed and the front door is slammed behind us he is sweetness and light - the most agreeable and considerate travel companion. Whereas, because of past experiences, I'm a nervous wreck trying to predict and plan for potential disasters.

Like the time we travelled to Galway for the arts festival some years ago. The city was jammed but I was well organised (spontaneity and wheelchairs don't sit well together). After three phone calls to registered B&Bs weeks beforehand, I was finally convinced by a kindly landlady that her house was wheelchair accessible.

Arriving in early evening in the pelting rain, I eventually managed to haul and drag Eoin's wheelchair through a sea of ankle-deep gravel to knock on the front door, mentally cancelling our restaurant booking in favour of a delivered pizza. I couldn't face another backbreaking gravel-drag without a night's sleep.

Over the smiling landlady's shoulder I saw the hallway and my stomach gave a sickly lurch. An array of bulky hall furniture blocked the narrow passageway. Biting back my comments, I asked to see our room and things went from bad to worse. Sure, it was on the ground floor but the house was a treasure-trove of antiques, nick-knacks and tropical, indoor plants. A removal truck and a machete would have been required to make the place wheelchair accessible.

We ended up being forced to stay the night after ringing around and failing to find another room. Instead of a nice dinner and the Macnas parade, I ended up carrying my disgruntled adult son through the cluttered maze, and stranded, we ate our pizza and breakfast in the bedroom.

Our two-day break was ruined. Defeated, we left for home the following morning but before we went I asked our landlady how could she possibly have imagined her home was wheelchair accessible. She replied, her bottom lip wobbling: "I suppose I didn't think."

But along with the disasters, over the years we've had some wonderful trips that have encouraged us to keep trying. Last winter we went to the US for Eoin's 21st birthday and our needs were accommodated as a matter of course. The physical environment was hospitable, the buses accessible, and the people informed about disability issues. It was heaven, and it was affordable.

Legislation and education on disability issues there is working - unfortunately in Ireland, despite being well-intentioned, we seem to be, em, dragging our heels.