The crime against Down Syndrome babies in England

Sitting here watching the news, in the most cold and calculated way, I have just been subjected to a report on how 93% of babies with down syndrome are aborted in this country (you can read the article here). Amazingly the BBC chose to interview a mother and some really positive things came out of that interview. Of course, this was not the subject of the report, this was just an "interesting" side issue. The topic was how women are waiting later to have children and the fact that this results in children with down syndrome was simply an interesting point for study. It made me feel ashamed of this society of ours which talks about the eradication of almost 100, 000 people as "a decision".

What arrogance exists in this society of ours? A society that preaches inclusion and equality. This is a genocide based on the fact that we consider the people who have this condition to be unworthy of life. UNWORTHY OF LIFE! What right do we have for such an awe inducing "decision"? Here are people killed before they are born because they do not meet our apparently high standards for existence.

It is a true tragedy that we lose people who have every bit as much to contribute to this society as you and me - PROBABLY MORE!

What disgraceful arrogance in human beings allows us to "decide" that somebody does not deserve to live?

For anybody who feels that the decision to give a child with down syndrome a death sentence is just and right - stand back and think of the implications- not just for the child but for all. To destroy someone with love to give, with words to say, who without intervention would have a place in this world. In my head and my heart I go back to my own experience of friends in my life with down syndrome. How much these people had to give -how much they have given me- SO MUCH!

I go back to Jean Vanier a man who has learned more from people with down syndrome, and various other conditions, than from any others he has come into contact with- which include famous politicians and academics. This was a man who taught philosophy at university and yet NO college student and NO volume of Aristotle ever taught him more than living in community with those with "disabilities". There are hundreds of L'Arche communities all over the world filled with assistants who make the same claims as Vanier himself.

When you don't give somebody a chance at life how can you make claims about their value?

I have lived with someone with a supposed "disability" in my own life and to be perfectly honest he was a lot less disabled than the rest of us and so utterly alive. These days doctors would encourage mothers to abort babies with the same condition Garvan had. What a terrible hole in the world; not to have lost him in our family but NEVER to have had him. Below you can see him dressed as a spaceman at a party and also, with me when I was born.

There can be no worse crime than for a society to deny other human beings their right to life simply because, deep down, the rest of us think we are worth more.

The fact it is done silently and legally does not make it better - if anything it makes it worse.

What makes us think disability is a deficiency?

On Friday I went to a restaurant in London where you eat in the pitch black - weird I know but bear with me I am going somewhere with this. The idea is that when you can't see your other senses are heightened and your experience of food greatly improved. A friend of mine had recommended this place as a good and somewhat unusual venue for a Birthday meal. There was a group of nine of us. I had been told before hand that we would be assigned a blind waiter for the evening and that the reason for this was that the blind are the only people capable of navigating their way around the restaurant because it is so dark - I thought this was a clever idea but that was as deep as my thought went. My friend who made the initial recommendation also warned me that while we are used to our sight adjusting in the dark at this restaurant her eyes had not adjusted at all and she had not been able to see anything - no shadows, no shapes just absolute black.

I had never considered the difference between darkness and absolute pitch black before-where you can see nothing whatsoever - I am not sure I had even thought there was a difference- I have now realised that there is. Before entering the main dining area we met our waiter Ryan and we were asked to stand in a line with our hand on the right shoulder of the person in front us. Ryan then led us through a fairly dark corridor into the pitch black. I don't know how they achieve it but it is the case that I have never experienced any darkness like it-  dense black - I could see absolutely nothing and my eyes never adjusted during the two hour meal. When we entered I felt intensely vulnerable - there were obviously other people eating and I was overwhelmed by how loud everything seemed and how disorientating it was. Ryan led us clearly, warned us when we were approaching curtains and seated each of us at the table. It was necessary for him to place our hands on the chair and to guide us into it. I couldn't tell where any of my friends were, it was very strange and we were totally helpless - if we needed the toilet we had to raise our hand and a waiter would lead us out. We had lost all power. Truly fascinating - but now I am coming (at last!) to my point. Ryan was able to laugh and joke with us, to see to our needs and care for us - to ensure we got the food we ordered and he knew exactly what he was doing and where he was going.

This may seem like a small feat but it makes a huge point. Able bodied people are often of the opinion that a disabled person is in need of their pity because they believe disabled people have a deficiency that makes their lives less...livable. Our society questions whether children with disabilities should even be born - what is the point if they are just going to be miserable?

What an incredibly arrogant and blind (in the true sense of the word) assumption. While it may seem to be a small thing this restaurant stands to make this point - all nine of us were utterly useless in that space of darkness, given ten years I don't think I would have found my way out let alone waited on tables and served a total of 60 diners in one session. Yes able bodied people are fine until they find themselves challenged beyond their capacity. That is exactly what this place did and it showed that far from being disabled Ryan and his colleagues were highly able- there was no deficiency here - only efficiency - life had challenged them so much that they did not need sight. The deficiency is ours. I am not suggesting that sight is a bad thing or that we all walk around with eye patches- I am just making a point about the attitude of our supposedly equality loving world does not make room for actual equality- it strives for a sameness which devalues and disables all of us by failing to recognise both our abilities and our disabilities as aspects that make us real, struggling human beings. It is often our disabilities that make us great because they challenge us

It is also worth noting that because we were eating in the pitch black we all ate very carefully and to our amazement not one of us split anything on ourselves. Interesting. Even we had become more aware of our movement and the way we ate.

My eldest brother, as most will probably be aware, had no thumbs but his writing and sketching surpassed anything I have ever been capable of. He was incredibly precise and aware of detail. Far from being a deficiency his lack of thumbs made him very attentive to the formation of each word and picture. Equally, Jean Vanier who begun the L'Arche communities found in the adults he lived with life's greatest teachers. Having spent over forty years living with adults with learning disabilities he argues that these men and women are the people closest to Christ because their love of life and other human beings is without affectation or agenda- they give a tremendous amount- a million times more than they take. That is not to say that those in his communities are perfect - often they have been rejected by their families or institutionalised and they suffer a great deal because of this. However, in Vanier's homes able bodied people live as assistants, there is no differentiation between assistants and those they  assist - Vanier argues that the assistants are often in more need of his help then those they are supposed to be helping. And it is often those with the 'disability' that nurse these assistants back to health - the great Catholic writer Henri Nouwen went to L'Arche and found love and life there which helped him overcome crippling depression- he even wrote a book about the boy he was assingned to care for and I would recommend it if you are interested (just click on the title which will take you to Amazon) its called Adam

My ultimate point is how can we be so ignorant as not to recognise the realities of life and humanity? British society constantly repeats phrases about diversity and the value of diversity. Yet at the same time it would see a disabled child aborted legally up until birth because that baby is different - the wrong kind of diversity. How can you even claim equality when there are different laws for an 'able' and 'disabled' child? I suppose that what made me want to put this into words in the first place was seeing my friend's baby scan today - she is 6 months pregnant and you could see her little baby  clearly - I am just devastated by the fact that a baby with a disability can be thrown away and that the world will have lost a potentially beautiful human being with capacities that someone 'able bodied' may not have possessed. People talk of the arrogance of the Nazis who said that some people did not deserve life because they were not of the same value- how can this society claim a distinction?

Our values can only change when our hearts change and we admit that disability does not equate to deficiency - life is far too great, complex and mysterious to allow that.

Feeling under the weather - what would the saints say?

I woke up this morning with the feeling that today was going to be an effort. I am so exhausted and drained and I'm finding it hard to keep my patience as we roll steadily towards the end of term. It helps to be reminded that God is much closer than we might think and that is the great thing about having the saints so close to us; one is always faced with a good example- even when you feel like a good example is the last thing you want to be faced with. The Church in her wisdom gives us people - other human beings like us- who overcame their own trials and flaws in order to triumph over struggles of every kind - you name it there is bound to be a saint who has been there, done that, got over it, gone past it to that place we are all so desperate to reach (and sometimes feel so far from)

I guess most of us have saints that we feel a particular affection for even though we know that all are equally great and teach us lessons of equal value. There are a couple of people in particular who help me snap out of it when I get self indulgent. I thought that today, while I was sitting at my desk feeling like I've been trampled by a herd of large, clumsy elephants I would share the person who is getting me through the day (or one of them at least) I found the following video on YOUTUBE and I think it sums things up pretty nicely. May God bless you all today!:

WALKING THE WALK - CHOOSING LIFE

I had a brother named Garvan. He had been ill since he was born, he had no thumbs, was small for his age and had a rare blood disorder. He spent a reasonable amount of time in Great Ormond St Hospital in London. The death of a child is a terrible thing and I have many memories of Sunday at the cemetery with my parents and siblings. And tears- lots of tears. However, Garvan was one of the great lights in our family and one of four very different children. He was bright, loved maths (unlike me!), loved spaghetti (like me), was a brilliant artist and his writing at 12 was neater than mine is or will ever be (even though he had no thumbs). He knew he was not like other children and he put up with their questions patiently and with excellent humour. He also understood he was dying. He had asked my mother and she had decided to be honest and tell him that it was a possibility.

This knowledge gave Garvan a wisdom that no one had really expected. One day he told my mother that she should think about having another baby and that is why I am sitting here writing a blog. He said she needed someone else to hold when he was gone (since my other brother and sister were slightly more grown up) and that someone was me- my mother laughed it off but it obviously planted a thought in her head. She maintains that having a young child when Garvan died helped her to cope better than she otherwise would have. We still celebrate having Garvan in our lives and light a candle at the Christmas table to signify his presence.

Today children like Garvan are unlikely to have the chance to be born. Garvan loved life so much and knew how to live it with the most amazing gumption – probably because he knew there was a lot to cram in. He may have suffered but because of this suffering his understanding of the value of life became quite profound- profound in the most simple and honest sense. When I started this blog I wasn’t sure how much personal information it was appropriate to share-since I had never really read any blogs now I have read lots of brilliant ones and realise that sharing is a vital part of it- I now realise that it is important I tell you this. I wanted anyone who reads this to know that when I talk about living with a disabled child I recognise how difficult it must be to choose - I do not have my head in the clouds – I am aware of the reality; the pain and the joy. I want people to know that I choose life, that my parents who loved their child and had to endure him suffering would also choose life. Why? Not to validate their own choices but because that is what this amazing little boy – who is still so much part of our lives- would have chosen. The simple truth.

Learning not to have more but to be more

I am back at work today in a flurry of snow and blizzard, all the kids are full of joy, happy to see each other. I have spent the last few days marking mocks for one of my exam classes who I have last thing this afternoon. They are a hard class, by which I mean they have not had the best experience of the education system and they treat teachers with a type of suspicion. Maybe they are right because today I will have to give them back their results and I know they will be disappointed and disheartened by the grades they receive.

I want them to believe, as I said in my earlier post (Totus Tuus) that they have an inestimable value and no matter what mark they get for their paper they have so many gifts and talents. We raise people to be competitive, to want the best and step over others to get it. Why? It will not make you happy when you get to the top and survey the wasteland you have left behind you.

Jean Vanier founded communities which many of you may have heard of- they are called L’Arche and care for the marginalised of society-adults with learning disabilities- Jean Vanier worked as a University lecturer and wrote a doctorate on Aristotle. However, his path then led him into contact with people with learning disabilities and suddenly he knew his calling, rejecting the highly competitive world of academia. For him these people were the purist reflection of God, the poor who in every society have been rejected. His homes now exist all over the world- they are communities in which all are equal whether disabled or not. Together they pray and rejoice and share their lives. These people, not those in his academic experience, were the greatest teachers Vanier had ever encountered.

Our world would see these people destroyed before they were born; wiped from our lives. Should we really measure our success by such a society? I believe not and I will do my best to make my students believe that. If they don’t believe me today perhaps they will look back a few years down the line and agree that the paper (which I spent a long time marking) did not tell them anything about who they are or what they are capable of. No man or grade boundary can do that because the soul is without limits and bounds- we do not even know what we are capbale of. That is the great mystery of our own lives, entwined inevitably and beautifully with the mystery of others. We are the Easter people and hallelujah is our song.

A British paper published this article at the weekend, it is certainly not my favourite paper but this was something I appreciated reading:

http://www.dailymail.co.uk/femail/article-1104467/Victoria-Lambert-I-aborted-baby-disabled-feels-like-murder-haunts-day.html