Sunday, 5 August 2012

A lesson in life

So what did you spend the last week doing? Watching the Olympics? Enjoying the summer holidays? Maybe you went abroad for a week and were on holiday. Maybe you still are. We ALL need a break from the routine of our life, a change of scenery and the chance to unwind, recharge our batteries and have a break from our normal routine. There is nothing I like more than getting away with family and friends, sinking a few beers and catching up on my sleep. Most of all I like a few days of not blogging, it does get a little bit draining.

So you may wonder, what was I up to last week? Well yes, I was away. I asked for a few guest blogs and I've been inundated. So much so that I've a load for next week as well. I wanted to enjoy the Olympics, so I did ask for some, so I'll be restricting my blogging over the next week (unless something really needs addressing). But that wasn't what I wanted to talk about. I wanted to tell you about my holiday. I went away with someone very special who I love very dearly. She's a beautiful woman and she's not my wife ! You will (hopefully) be pleased to know that Mrs T gave the arrangement her full approval and I took two of my children and adopted another one for the week. Who was the woman? My cousin Theresa. Theresa is a few months younger than me. She lives in Barnet, in the care of Barnet Council and is a very special person. This picture is us enjoying a drink in the Riviera Sol Cafe.

My cousin has Downes syndrome and this is her holiday for the year. We went with HCPT (a charity) and stayed at Hosanna House in Bartres, which is three kilometres outside Lourdes. Our group consisted of 40 people, nine of whom needed some form of help and assistance. I give what talents I possess to the group. My role includes a fair bit of driving (not after I've drunk any alcohol, I hasten to add, as there is a zero tolerance for drink & driving - the picture was on my 'day off') of minibuses. I also use my small talents as a musician to try and entertain the group.

My cousin loves visiting Lourdes with the group. The group is inclusive, with everyone doing all activities together. It is impossible to describe what the experience we had was like. Although a pilgrimage to Lourdes has a strong religious theme, with our group this is based on practical help of every member of the team and reflection on ways we can be better people within our own system of belief, whatever that is. My 'adopted' son for the week is Jewish. He came because he wanted to help with the group (strapping lads who can lift and push wheelchairs are at a premium). He confessed to me that before travelling he had minor worries that people in the group would not necessarily accept him because of his faith. By the end of the first day, his worries were dispelled. It wouldn't surprise me if one day, he would make a very able rabbi (although I don't think that's on his plan right now).  He was rather relieved to find that we didn't say the rosary once during the week (although in the past we've had one or two who have felt their wasn't a big enough 'Catholic' element within our particular group). The overwhelming view in our group is that our expression of faith is more based on the practical and the sense of brother and sisterhood we develop during the week.

The reason that most of the helpers come is because they get a huge amount out of helping people, who otherwise wouldn't get a holiday to get out and about. Hosanna House is specially equipped for dealing with handicapped people. This means that there are hoists to lift people, nurses and doctors within the group and everywhere is wheelchair accessable.

One of our group, Helen, who has spent her life in a wheelchair spent an hour with the CEO of the HCPT trust explaining why the rooms are not fit for purpose. It amazes me that resources such as Helen are never usually consulted. The practical things such as ample room for helpers to get someone on  a toilet, push button door openers, rooms laid out to allow hoist access. I asked Helen why she likes this group as she's not particularly religious and she explained that most activities for the handicapped involve activities like basket weaving and being patronised. That doesn't happen with our group.

I have been going with the group most years since 2001. I used to take my disabled mum. When she passed away in 2008, I started taking Theresa. One thing which has become clear is that for many of the people within the group, the cuts imposed by the coalition are starting to bite. It also appears that less people generally are going away due to precious money being needed for day to day living. As I said, we all need a break. For people with disabilities, living in hostels or care homes, this is especially necessary. It is easier for disabled members of society who belong to faith groups to go on holiday. The Catholic church, for all it's faults, does look after people and most churches have appeals to send people to Lourdes, which are well sponsored. It disturbs me greatly that people of different or no faith, who don't have such a support network, are in effect financially excluded, because they don't have a machine to raise money for their holiday. HCPT do not discriminate against people who are not Catholic in who goes and who gets financial assistance. Having said that there are many people who our trip would not be their cup of tea, so many will completely miss out.

I go to Lourdes with our group for many reasons. The sheer joy which I saw on Theresa's face for much of the week was reason enough. We are the same age and were born six months apart in the same bit of Barnet. Probably 99.999% of our gene's (being cousins) are the same. Sadly the .0001% which gave her Downes syndrome, has meant we have had very different lives. We as we walked down the road or sat in bars that .0001% defined how we are treated and regarded.

Perhaps the saddest irony of our week in Lourdes is that in 1944, Lourdes was under Nazi occupation. This shrine where millions of sick and disabled people have visited was controlled by a monstrous regime who's policy towards people such as my cousin was one of instant death. They would have considered Theresa to be a worthless life, one with no purpose and they would have executed her. All of the joy she brings to the world would be lost.

As far as I'm concerned, anyone who discriminates against my cousin, because of that .0001% genetic difference is as much a Nazi as those evil bastards who sponsored a state execution of her ilk. Once you  start walking down the road to saying "These people" and reducing their status as human beings you are on the rocky road back to gas chambers. The disabled were the first victims of the Nazi repression.

I look at the arrogant, smug policies of the rotund politicians, some of whom in Barnet live in flats provided by charities and I despair. I  often wonder just how you can get through to people who really don't give a shit about their fellow man.  What especially disturbs me is how David Cameron, who had a disabled son, can preside over cuts which so disadvantage my friends who I travelled with? I genuinely thought that his experiences would make him a different kind of Tory. The stories I've heard of the effects of cuts in the last week have convinced me that Cameron is perhaps even more callous and heartless than those who have not had such a lesson in life. It had never really occurred to me before, but it is rather clear that some of us can attend a lesson in life and totally ignore it.

One final thing I must say. When I get back, a few people usually say to me 'Oh, you are so marvellous taking your cousin away'. Not a bit of it. I had a complete blast all week. It was great.

Have a great Sunday. I'm now off to open a beer and watch the Olympics !


Zoe said...

The gift is not in the time you give but being allowed to give the time. It is often hard to choose who goes simply because some difficulties can cause disruption in a group. spare a thought for the sole carers who do not have the luxury of group activities such as those with unsociable behavior. Those carers are isolated by society where many venues would make you feel unwelcome. They may be trendy venues but for many LDD they are no go areas. Theresa looked like she had a great time.

concernedcarer said...


Your humility leaves me brimming with emotion.

It is my dream that every vulnerable person should have a “Roger” in his or her life, especially after his or her parents have died.

When we run holiday projects at Larches Community for people with learning disabilities, autism and mental health issues, ( volunteers often begin by telling us they “have a lot to give.” After completing the project, their usual response is “I have learnt so much from Larches Community; from the people who use your services and about myself.”

To anyone who would like to take Roger’s lead in making us a more equal and inclusive community - confront your fears; challenge your beliefs; find some time and get stuck in!
Linda Edwards

tw said...

As a daughter of a Holocaust survivor I don't use comparisons with the Nazis lightly, and I have resisted and objected to such comparisons in various contexts throughout my activist life.

But when I read the following of your post, dear Roger - I found myself crying and realized you touched the very nerve that keeps me going: "As far as I'm concerned, anyone who discriminates against my cousin, because of that .0001% genetic difference is as much a Nazi as those evil bastards who sponsored a state execution of her ilk. Once you start walking down the road to saying "These people" and reducing their status as human beings you are on the rocky road back to gas chambers. The disabled were the first victims of the Nazi repression."

'Never again' - as they say in the country I come from and refer to the Holocaust - is for you and me and all the other magnificent people around us never again injustice, cruelty and inhumane treatment to anyone, at any level, anywhere!

A simple objective of basic humanism that we all try to turn into reality here and now, against a backdrop of cruelty, injustice and inhumane treatment that are hidden behind the smiling faces, the 'civil' language, the 'rational' arguments and the 'polite' behaviour of our local and national policy makers.

Lately the frustration of doing so is growing with every conversation with every disabled person, with every carer, with every story and example of how this injustice is caused or compounded by heartless manipulation of disabled and ill people and their family carers into accepting that care is a commodity to be played for in market conditions and measured by financial value and profit. Manipulating them into accepting that 'there is no choice' but to suffer isolation, humiliation and poor care services by non-professional private companies who run businesses in the care 'industry' only for profit.

But the greater the frustration and anger, the more resolute we become to turn these policies around and make this society just and equal.

Thankfully, with all the heroes of carers and the wise and heart warming disabled people I meet through BAPS, CADDSS, The Space Parents Group and around these (you being one of them), in Barnet and beyond - I know we will succeed in making our community humane.