Saturday, 8 August 2015

Consideration for disabled people when travelling

Sunset over Bartres
Most years at this time, I travel to Hosanna House in Bartres in France with a group of disabled people, as a volunteer helper with HCPT (please note this blog is written totally in a personal capacity and does not necessarily represent any view or policy of HCPT). I have written about this before, as I personally find it to be a fantastic experience. In our group there were 36 people. Approx 1/3 have some sort of disability. Some have Downs Syndrome, some cerebal palsy, some are just a bit old and rickety and can't walk too far. I've been a member of the group since 2001. In that time I took my mother, who was housebound after a stroke, on five occasions. When shen passed away, I took my cousin, who is my age and has Downs syndrome on four occasions. Unfortunately she has deteriorated and the views of the care home where she lives is that it would not be in her interests to go.

Our Group
This year, as I have in other years, I took two of my teenage childen. They have been going for many years. I do not force them to go, they opt in. What do they do when they are there? Well they don't have TV or easy access to broadband. They go to mass every day (HCPT is a faith based organisation and the focus of trip is around the shrine of Lourdes, which is about 4km from Bartres). My children do not attend mass in the UK regularly. Although they were raised in the Roman Catholic tradition, like many teenagers, they are not overly keen on going. Apart from Xmas and Easter, requests  to attend mass are usually politely declined and attempts to force the issue are met with furious argument. When they are away, they attend without fuss and my son plays the violin at mass (something he would never do in Mill Hill). I suspect that the daily mass is not the reason they attend. It probably sounds like hell for most teenagers, from the above description. I consider my kids to be quite typical teenagers. Whilst I love them to death, they are very typical in their lifestyle and are no saints. They do however find the week to be a brilliant experience. In their everyday life, they don't have much contact with disabled people. On the trip, they spend every waking minute in the company of people with issues and challenges. If you haven't had much contact with disabled people, it may or may not come as a surprise that many are highly intelligent. They have exactly the same wants and desires as the rest of us. They don't want to be patronised. They are not particularly keen on basket weaving or other activities which are often part of activities that they are asked to partake in. They want to have some fun. One of our group, Helen, who is severely disabled with cerebal palsy and is confined to an electric wheelchair, requiring lifting with every activity that can't be done when sitting down, is one of the most funny and intelligent people you will meet. Several years ago, on a trip, she shocked a rather "holy Joe" pilgrim who asked her what the NHS could do to improve the quality of her life. The answer "Get me a male prostitute" was not quite what they expected. Helen can be hard to understand, but it is always worth the effort. When HCPT remodelled Hosanna House, she advised the designer on what they should do to improve accessability. Some of her suggestions were acted upon and have made a huge difference. Some weren't (annoyingly for Helen when she is in a bedroom, she can't get out without help as the doors open inwards).

My elder daughter was assigned to care for a teenager with Downs syndrome (along with a friends teenage daughter, who also attended). This was a huge challenge for my daughter, who has not been a "primary helper" previously. The young lady in question was lovely, but also rather mischievous. Basically she needed to 24 hour companionship for a number of reasons (not least because she was rather keen on winding everyone up!). My daughter found the experience to be a very rewarding experience. My son, who is younger was primarily involved in tea making duties and pushing the elderly members of the group around on trips. He spent much of his free time playing table tennis with another teenager. Again he had a great week.

Often people assume that such groups as ours are all very religious people seeking redemption. I can only speak for our group, but I think this couldn't be more wide of the mark. The group are primarily driven by a desire to help other people and HCPT offer a great way to do it. I've no idea how many of the group are regular church attenders, but I'd be very surprised if the total was above 50%. Various faiths have been represented. After Roman Catholics, CofE are the next most well represented group, but we had Methodists, Church of Scotland and Evangelical members. There are also quite a few people who dont ally themeselves with any formal group, some who are no faith at all and a few people of Jewish and other non Christian traditions. In the group, none of this matters. We are a group. HCPT has an ethos of doing everything together. This means we eat together, we socialise together. It means at meals, we try to sit with different people every day, so little cliques are avoided. our group has a strong musical ethos. As I mentioned my son plays violin, I take a guitar (this is the only time I play guitar in mass, being primarily a punk rocker), and we had a clarinetist and an organist. As  well as music in mass, every evening we have a bit of a sing song. One of the group, Margaret is  a folk singer of note, playing regularly in York. Her speciality is risque ditties. She's 80 next week and her party piece this year was "Teenage Dirtbag".

One other thing which must be mentioned is the food at Hosanna House. Jean Bernard, the Basque chef ensures that we feast like kings and queens. The food is delicious and all freshly prepared. Fresh salads, regional delicasies, finished off with the finest cheeses. Meals are accompanied with a glass or two of wine, for those who partake.  Before I first attended, I assumed the meals would be of school dinner quality. They are actually some of the finest meals I've had. My kids have developed a liking for duck, Coquelles St Jacques and many other foods which previously they would have point blank refused. As there is a lot of physical activity, you get hungry and there is no choice of what you get. As it is all delicious, this isn't generally a problem (if you have a special dietry requirement, this is catered for).

It is impossible to describe how the dynamics of how ther group works, or why it is a joy, not a chore. It is also impossible to describe how much personal joy I get from the experience. My view is that anyone who has a heart and who likes the company of other people would get something from the week. I'd strongly urge anyone who cares about people to consider volunteering as a helper. HCPT is not for everyone. There are secular organisations who do equally great work, although I've not been with any. I did however speak to some of the disabled people. I asked one guy, which he preferred, his answer surprised me (why I don't know). He said "I like both, they are both different. Wouldn't you get sick of steak if you ate it every day". This guy was someone with no religous affiliation. I asked him if he enjoyed the daily mass. He said "It pulls the group together". He also highlighted something I hadn't appreciated. Many disabled adults have seen many friends die. They've also lost family and for them, the section of the mass where we are encouraged to say prayers for specific people and intentions are perhaps a highlight. Often people will break down in tears when they say their bit. At first I thought this was a bad thing, but when I discussed it, it became clear that for many it was a massive help in dealing with the grief of loss. We have a service which simply consists of lighting a candle for someone who is ill, troubled or passed away. Some just say a name, some tell the story. It is moving. Many past members of groups, some who died decades ago are recalled. It is a very powerful emotion. I wonder how many of us bottle suchg things for years/

So far I've spoken of the upside. Now for the downside. For me I feel highly conflicted. I always come away having to deal with some very negative emotions. For me this time, for some reason, I was more troubled and in mental turmoil than ever. This was almost to the point that it ruined the trip. Having been many times, I know the routine, I love the expereince, but from the moment we arrived at the airport, to the moment we got back home, I saw a barrage of casual ignorance, intolerance and in some cases sheer selfishness of my fellow man towards the disabled members of our community. This time, in a way I've never felt before, this really got to me. There are the little things, such as the fact people always talk to the person pushing the chair, rather than the person in it. I should state that this is not an issue in our group, who "get it".

When we arrived at Stanstead, the first challenge is boarding disabled people onto the plane. This is always traumatic. Airlines take no account of how you load disabled people in design of aircraft. They make billions, but there is not design consideration at all of how how transfer a heavy adult into an aircraft seat. In short, this makes it a dangerous and stressful operation for both the disabled person and the people moving them. Just consider how you move an 18 stone dead weight into a seat, where you have to bend your back because of overhead lockers and where other seats, armrests have to be navigated. Even worse was the way the airline have abolished their policy where people in wheelchairs have to be loaded first. To transfer a quadraplegic person can take up to ten minutes. It involves 3-4 people to lift the person out of their chair, into an aisle chair. They then have to be hauled out of the aisle chair and into their seat, then slid along on a slider blanket to a middle seat.

This is hard enough, but when people are barging past and trying to get "the best seats" it is almost impossible. It was bad enough going out, coming back, I saw the most diabolical thing ever. A group, supposedly on pligrimmage with their parish arrived early. They boarded first. When we arrived, we had two people who needed "heavy lifts". This group refused to move from seats with moveable arms, and one took issue with me for "not arriving earlier" (we arrived in ample time). This particluar nasty individual said "we have disabled people too", failing to realise the difference between someone with a walking stick and a quadraplegic who needs manhandling into a seat. She then proceeded to get one of her group to video "what we were doing" on her mobile phone, to demonstrate how much of a pain in the arse we were with our disabled people, for their "well organised group".  I informed the said individual exactly what I thought of her, in a way that did not contain expletives. It gave a tad of reassurrance that members of her own group expressed disgust.

As a result of her intransigence, we had to lift a severely disabled person over an armrest. This may sound as nothing, but for her and for the helpers, an operation that is difficult had extra risks and was even more painful and distressing than it would be otherwise. I cannot tell you how disgusted I was. As I didn't want to inflame the situation, I stepped back, but I found it hard to contain myself as she berated another member of our group for "thinking HCPT own the plane". We simply asked for four people to change seats, so we could let two severly disabled people be moved on in safety. She said we "walked on like we owned the plane and simply were looking for the best seats for our group" I found this horrific. I've done this many times and have never seen another group put their own interests, before those of a disabled person before.

For some reason, this time I was far more acutely aware of this casual discrimintation. It is vile and in many ways it negated a lot of the good which a week of calm reflection had done. So can I sign off with a simple request. If you are travelling and you have a nice comfy seat, please give it up without needing to be asked if you see a disabled person or someone with greater need. Sure you may need to have a minor inconvenience, but I have seen first hand the issues disabled people face every day of their lives. Some cannot be avoided, but few cannot be negated with care and consideration.

1 comment:

John S said...

Hi Roger,
It is so sad your trip was spoilt by the intransigent selfishness of others displaying an absolute disregard and no empathy for the severely disabled , which is a growing phenomenon as the violent assaults on people with a disability over the past five years show.

However when you consider the drip drip attack on the disabled by the first and current Cameron governments, where disabled people are no longer seen as poor dears but benefit scroungers, to lazy to work no matter their level of disability. A hate campaign that has been enthusiastically supported by the right wing press and media, your sad story only reflects the anti disabled mentality we have witnessed from government.

Whilst it is a painful experience witnessing this disgusting behaviour, we can only hope those in government that sowed these seeds of contempt for the disabled, take a look in the mirror and put an end to this breeding of hate for those with a disability, in the name of failing austerity.