Disabled people: Doing holidays differently
Alexa Wilson and Martyn Sibley have very different requirements. Alexa is a mum of two children with learning disabilities, and Martyn is a powerchair user. Their stories prove there is no one-size-fits-all solution to making a holiday accessible.
Speaking on a recent podcast from Ouch!, Alexa told presenters Liz and Rob how she and her husband prepare the children, Toby and Ellie, in advance of a trip.
"We have to start weeks in advance, warning them we are going on holiday and that there is going to be a change in their routine. So we use a system of visual prompts with pictures of the place that we're going - especially with our son Toby who's seven. He has very little concept of time so it's quite difficult. You have to strike a balance between giving them adequate warning that their routine is going to change and the possibility that if you tell them too soon, they're going to be worrying about it for weeks."
Click this link to listen to the full interview with Alexa and Martyn
The children have Fragile X syndrome, a condition which Alexa says "presents a bit like autism".
Self-catering works well for the family and they have returned 14 times to a cottage in Wales that is familiar, safe and has none of the "sensory issues" that a hotel would have.
It takes three and a half hours to get there; mum Alexa says they are lucky as the children both like being in the car but adds: "We do have to listen to the same music over and over again the entire way there." We later discovered this is a six minute long George Michael track, on repeat.
"We tend to take two cars because it gives us a degree of flexibility when we're there because there are some activities that Toby can access that Ellie can't and vice versa. For example there's a swimming pool that Toby loves to go to, it has a wave machine and a little river that goes outside that you slope round on, and he absolutely loves it.
"Ellie is terrified by it because, when the wave machine is going to come on, a claxon sounds and she can't cope. It terrified her the first time she heard it and she literally bolted out of the building in her swimming costume screaming." To solve this, the family split up and do separate activities suited to the individual child.
Complicated it may sound but Alexa maintains it's good for them all to get away.
Martyn has to plan a lot too ... but in a very different way. He says: "I have a mechanical and physical disability called Spinal Muscular Atrophy. I have to go everywhere in my electric wheelchair. I have to have personal assistants with me 24/7 to hoist, help me shower and turn me over in the night time."
A lover of international holidays, Martyn's travels have included: California, New York, Mexico, Australia, Germany and Singapore. To visit all these places he needs to transport his wheelchair and an "entourage" of personal assistants.
As PAs don't come for free, funding a trip can look pretty impossible if you're not rich. The classic young person's approach to travel - that of "bumming" around far-flung resorts picking up bar-work as you go - is understandably not available to a large number of disabled people.
Martyn receives a Personal Budget from his social services which is intended to pay for his daily care needs and assistance. As he'll need care no matter where he is, he creatively negotiates a way of paying for holiday assistants with this money.
He says: "If it's one week abroad there's often a compromise you can come to where you're able to pay the person the budget for that week to do the care. And maybe they still have to fund some of their cost of the flight, but they're going to get a trip abroad for a week."
Wheelchair, check, assistants, check, but Martyn also needs a hoist so he can be lifted safely. So does that mean he has to drag more equipment around with him too?
"When we did a road trip around California, I went with a friend who also has SMA and we took a portable hoist on the plane with us," he explained you get used to the aircraft boarding procedures involved in carting chairs and lifting gear around. "Because we were on the move it was easier to have our own hoist, but, other times I just locate a service provider through the internet, and hire the hoist as well."
Do you do your holidays "differently"? How much planning do you have to do in advance of leaving home? Are holidays always worth doing? Tell us in the comments below.
Comment number 1.
At 18th Jul 2012, Rainbowgh wrote:I was born with united cerebral palsey on one side of my body. I am a electric wheelchair user as well and face many of similar issues while traveling. The availabilty of a hoist always poses a problem as well as accommodating other PCAS. It was great to get some insight from another wheelchair user. I'll be sure to utilize these tips on my future vacations.
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