Raffles has taken an increasing interest in contributing to “his” blog. And as much as he continues to enjoy bringing you his restaurant reviews, a recent interview with the lovely Ian “Herbie” Hemphill seems to have inspired him to get his Oprah on…
While at first his grand plan to start “interviewing cool people” about food and travel, I thought this sounded like a bunch of extra work for his PA/mama/slave, the words of a very successful woman who I admire greatly during a discussion about some of Raffles more grandiose plans, rang in my head. Those words? “Why not? Why put limitations on him?”
That stopped me in my tracks. Why indeed? So I’m not. In fact I’m actively encouraging his love of words and interest in the people who inspire him. One of those people is Julie from Have Wheelchair Will Travel, a wonderful blog that offers loads of important information about accessible family travel. But enough from me, over to Raffles and Julie;
My friend’s little brother has a disability. I love him because he’s so sweet. I know his mum and dad need to do a bunch of stuff that we don’t need to when they travel to make it safe for him but they still travel because it is awesome and he loves it and they love him. Is it OK if I ask you some questions about how you travel and about your son?
Thanks for asking such great questions about our son BJ and travelling with a wheelchair.We love it when people are interested to know a little bit more about what is involved because travelling with a wheelchair can be tricky.
What is cerebral palsy?
Cerebral palsy is a name which covers a group of conditions which affect a person’s ability to move. It is permanent but usually doesn’t get any worse as a child grows up. Cerebral palsy affects people in different ways but usually affects body movement, muscle control, muscle coordination and balance.
Can you tell me about BJ?
BJ has a very rare type of cerebral palsy. He has lots of extra movement all the time. It must be exhausting for him because his body is always moving. BJ is lucky because he did learn to sit at around 2 years old (much later than other children), he can bottom shuffle to get around on the floor and he can pull himself up into standing. He mostly needs help walking but he did take steps by himself at 18 years old. I was extremely proud. You can watch it here as it will give you an idea of how hard it is for him to walk compared to you. BJ also doesn’t use words to talk (they call this non-verbal) so it can be very frustrating for him. He uses lots of expression, gestures like pointing and sometimes picture symbols.
Does having a wheelchair stop you from exploring some places?
We can usually find a way to explore the places we want to travel to but a wheelchair does limit where we can go once we get there. Sometimes walks have lots of stairs or old buildings have no ramp access or narrow doorways.
How does it work having a wheelchair on planes and trains?
We need to travel everywhere with BJ’s wheelchair. The airlines usually let us take his wheelchair right to the plane door and then BJ walks with his Dad’s help to his seat. If people can’t walk the airlines have a special wheelchair called and aisle chair which is very narrow and fits between the seats on the plane to get a person to their seat. BJ’s wheelchair travels with the rest of the luggage in the cargo hold of the plane. BJ is always first on the plane and last off because the airline baggage handlers need time to organise his wheelchair.
Some airports don’t have a gangway to the plane and people walk on the tarmac and go up stairs to get on. This is a problem for people like BJ who need a wheelchair. At these airports they have a special lift which takes BJ up to the door of the plane. BJ thinks this is pretty cool and fun.
What about at the beach? How do you go on the beach?
When BJ was little it was really hard going to the beach because the wheels of his wheelchair would dig into the sand and sink. Thank goodness some very clever people designed a special wheelchair just for the beach. BJ loves it. The beach wheelchair has inflated balloon tyres which don’t dig into the sand and make it possible for us to go for a walk along the beach. BJ also likes using it in the water. He thinks it is fun catching a wave in the chair.
Which places are better to go to with a wheelchair?
Countries which have more modern facilities are best for us because they have good paths to walk on and they often have rules about having good facilities for everyone. In Australia and America for example, all new buildings must provide wheelchair access and wheelchair accessible toilets.
Where is the best place you’ve been on holiday?
I think our kids would definitely say Disneyland is the best place. We found it so easy with the wheelchair. The people who work at Disneyland are very helpful. They seem to have a great understanding of a range of disabilities and what will make it easier for their families. Many children with a disability find it very hard to wait for a long time in a queue. Disneyland understands this and has a way of making it easier for these kids. They have a card called the Disability Access Service Card which allows those children to return at a special time saving them from getting distressed waiting in a long queue.
Where is BJ’s favourite place?
BJ loves America because there are so many cool things to do. He rode across the Golden Gate Bridge in an old fashioned fire truck, he loved Lego Land and his favourite place on earth is Disneyland. BJ loves meeting the characters; he enjoys the rides and shows. The cast members make him feel like a bit of a rock star with high fives and lots of smiles everywhere he goes around the park. He hasn’t been to Disney World in Florida but I bet he would love that too.
Even though I love her loads and loads sometimes I find it difficult to be patient with my little sister. Mama and dad need to give her extra attention because she’s small and needs more help than I do. Does BJ’s sister find it hard to be patient sometimes too?
AJ is a caring little sister. She and BJ have had a very close relationship from early on and I think all the fun travel we do has helped that. I am sure she finds it hard at times but she rarely shows she is upset because I think she sees how hard it is for BJ.
We always make sure she knows how much she is loved and appreciated and she often gets special treats or experiences just for her. She likes the movie “Eloise at the Plaza” so when we were in New York I organised an “Eloise day” where we did things that Eloise does in the movie. We had the Eloise High Tea at the Plaza Hotel, we did a horse and buggy ride through Central Park and went to Toys R Us and FAO Schwartz.
What can I do to help people with disabilities?
BJ loves people talking to him and taking an interest in his photos on his iPad. Saying “hello” and making sure everyone is included is the best thing anyone can do. No-one likes to feel left out.