A pro-life perspective on letting go

Last night I watched Letting Go on BBC1, a documentary by disability campaigner Rosa Monckton telling the stories of several young people with learning difficulties as they make their first steps towards independent living.  If you didn't see it, it's well worth catching on iPlayer.

Rosa's 16 year old daughter Domenica has Down's Syndrome, as did some of the other young people featured.  As far as Domenica is concerned the sky's the limit when it comes to planning for her future - she loves dancing and at the end of the programme was thrilled to secure a place at a stage school which teaches special needs students together with their mainstream peers - but Rosa is only too painfully aware of the harsh realities her daughter is going to come up against as she tries to find her niche in the world.

This theme was repeated amongst the other young people and parents that Rosa talked to.  Like all parents, those we met in this programme wanted to encourage their children to live their dreams and achieve their full potential; like all parents, they knew that the normal course of things required them to let their chicks fly the nest and live their own lives, for their own good.  Unlike the majority of  parents, however, they were painfully aware that theirs wasn't quite the normal course of things and that there would be special challenges to address. One of the young people, a young man with Down's Syndrome, had already come up against some of those challenges. His attempt to live an independent life in his own flat had gone very wrong, despite a lot of support from his parents and carers, because his neighbours insisted on being so cruel to him that they made his life in the flat miserable and ultimately untenable.

As the mother of a disabled teenager, so many of the concerns of Rosa and the other parents struck me to the heart.  The dilemma of encouraging your child to have high goals and hopes for the future yet be realistic about the very real physical limitations that have to be addressed; the fear that others will not understand them, will mock them for being "different" and leave them lonely... and above all, always there, a spectral shadow subtly darkening even the sunniest day, the fear of how they will manage when you are no longer around - as one day you won't be.  The ghost of that fear is a terrible one, always with you, sometimes in the background and sometimes right there in your face gripping you by the throat.

All but one of the young people featured were still living in the parental home.  The one that did have her own home - a 28 year old - was still very dependent on her parents who came round daily to give her care, because as she lacked a formal diagnosis (although she very obviously suffered from a syndrome of learning and physical disabilities) she was not eligible for state funded care of the sort she needed.

It seems that so many people who are carers for relations with mental or physical disabilities end up struggling at some point to get necessary assistance or facilities for them.  It is an extra worry and burden that no-one needs when they are already expending (however willingly and lovingly) a demanding amount of emotional and physical energy on supporting their child.  A particularly demanding aspect of that support lies in encouraging your child to be happy and positive and see their future as worth looking forward to.  The parents of these young people were happy to sacrifice themselves to give their children all the backup they needed, but at the same time were worried sick about the future care and wellbeing of those children once they were no longer in a position to help, and the combined strain showed.

Isn't this - the provision of care and support for the most vulnerable in our society - where we should be concentrating our resources?  These parents were role models of how to convince a disabled person of their worth, but the sad fact is that the wider world out there isn't necessarily like that.  Aborting babies with Down's Syndrome (an absolute travesty: like most Down's sufferers, the youngsters featured in this programme were happy and adorable) and promoting euthanasia as the answer to life's difficulties are neither good uses of time and money, or the right ways to encourage the inclusivity and equality that we like to pride ourselves on these days.  In fact inclusivity and equality are going to become progressively emptier terms the more we deny life to those who aren't "normal" or "perfect", because our actions simply encourage the attitudes which the young man tormented by his neighbours came across.  If we really celebrate diversity, if we really believe that no-one should be shunned or teased for being "different", then let's embrace all life and every person and concentrate on giving them reasons to live, not die.

I'm afraid I can't remember the exact words she used, but at the end of the programme Rosa commented that if a society is judged by the way it treats its most vulnerable members then our society is sorely lacking.  We need to take a long, hard and deep look at why that is - starting from the very beginning.

Marriage: who's it for?

Alastair Roberts: courtesy Bump Babies Beyond

I'm going to dip my toe into the stormy waters of the gay marriage debate once more, because I think this article that appeared on Bump Babies Beyond over the weekend is very good.  Written by a PhD student at Durham University, Alastair Roberts, it makes a useful distinction between two ways of looking at the definition of marriage and from this explains why a commonly-held definition (as opposed to different individuals or sectors of society holding different ones) is important.

One position, which would be supported by defenders of gay marriage, can be defined as "additive" in character.  This means that the current definition of marriage can be "enlarged" to include a class of couple not currently included, without infringing on the rights of those already included.  The second position is "ecological" in nature.  As Alastair puts it, "Gay marriage does not just ‘extend’ marriage to a wider set of persons, leaving the institution itself fundamentally unchanged. Rather, gay marriage changes what marriage is for society as a whole: it alters the DNA of the institution itself."

Marriage is not simply a question of the private affections and interests of two individuals, or even the public celebration of their affection.  It is a public institution with ramifications for social structure and stability and the nurture of our future generations.  Its function in society transcends the interests of the two individuals who are getting married; that is why we need to consider carefully as to whether we can really consider its definition to be expandable, or whether the current definition is in fact reflecting an ecological reality beyond power of law to alter. (In Christian terms this roughly corresponds, in a sociological context, to the "natural law" argument, as alluded to by Fr Ray Blake today on his blog.) I will not attempt to repeat what Roberts says much better in his article; please read the original!

For Christians and pro-lifers there is another important consideration.  A homosexual couple wishing to bring up children, unless they adopt, will have to conceive via an "assisted" means like artificial insemination or IVF, using a surrogate mother in the case of a male couple.  These means of conception are an issue in themselves, as a future post will consider.

Aila's Fund

Photo: Robert Bousfield

Most of our work as a pro-life group in the parish is awareness raising, encouraging our fellow Catholics to read up, speak and pray about the beauty and dignity of each and every human life from the moment of conception. But a natural part of our work is also fundraising for various events and causes; we had the White Flower Appeal last weekend in aid of SPUC, through cake stalls over the past year and a half we've raised funds to restore the Memorial to the Unborn Child in Hills Cemetery, things like that. But this time we're doing something slightly different, instead of collecting money for an organisation or a place we are helping someone a little closer to home.

One of our group members, Anneli, has a daughter with a neurological disorder known as Friedreich's Ataxia which was diagnosed a couple of years ago. Out of nowhere Aila was faced with the sudden, shocking news that as she got older her life would not follow the same pattern as other girls, that this condition would affect her balance, her speech, eventually result in her needing to use a wheelchair. This is difficult, frightening stuff for anyone to hear, let alone a teenager. And, along side the physical and psychological struggles that come with such a diagnosis (and I'm not trying to play them down by the way, but those are not my details to impart - you can read Anneli's take in an earlier post), part of what makes adapting to such a condition so difficult in our modern society is the fear of not being 'normal'. If you ask most of us precisely what a 'normal person' is we will promptly say that there is no such thing, that the 'average Joe' is totally false and that, of course, everyone is unique. This is, most definitely, true and we mean it when we say it, but this notion of a normal person still endures and has a strong hold in the minds of many of us ...well to be more exact the idea of what is not normal does.

Aila has had a lot of adjustments to make over the past couple of years and will have even more to make in the future. Because her mobility and balance are gradually decreasing (she is already having to use a wheelchair if walking for more than a very short distance is required and cannot manage any distance outside by herself without holding someone's arm), it is vitally important that we as a group and as a parish help her to move forward, to do this as smoothly as possible. One very obvious consideration in all this is that her bedroom and the toilet in her house are upstairs and it is very impractical, very difficult and potentially dangerous for her to be tackling the staircase several times a day. What she and her family want to do is have their house extended to create a downstairs bedroom and bathroom just for her. (Not an unreasonable request I'm sure you'll agree.) The council have agreed to fund the greater part of this but there is an excess of around £16,000 which her family will have to provide, and provide quickly. To help them do this we have started "Aila's Fund", a dedicated series of fund raising events to help pay for this extension. We have all sorts planned; cake sales (everybody likes cake), concerts, sponsored cycles, photo shoots and goodness knows what else we'll come up with. But rest assured all of the donations we receive will go straight to paying for the work to be done and, after that, for an overseas holiday for Aila too. Anything left over at the end will be donated to Ataxia UK for the work they do in working with people like Aila and in the research they carry out. 

Here's the list of what we have planned so far;

* Sunday, 19th February - Cake sale in St. John's RC church hall, 3 Springfield Road, Horsham, West Sussex after 9am Mass (i.e. about 10am)

* Saturday, 24th March - Photo shoot for families and individuals in rooms 2/3 in St. John's hall as above (by appointment: details to follow)

* A friend is making a sponsored cycle ride from London to John O'Groats (date TBC)
* More events are also in the pipeline and we'll keep you posted!

So please do come along to all of the events in the next few months and support Aila, she may be too shy to tell you herself but she really is very grateful.