Brian Wilson: Still having to fight for everything

Twenty-one years ago this weekend, our second child was obliging enough to arrive at an hour which allowed me to witness the event, hold him in my arms and depart in time for a celebratory pint with my brother-in-law.

In retrospect, I was aware it had occurred to me that there was something a little bit different about how he wriggled into the world. However, since I was the veteran of only one similar event, the significance of that vague perception never occurred to me.

We had just got back from the pub when the phone went. It was one of these calls you don’t forget. My wife told me, very calmly, that our beautiful son had Down’s Syndrome. And thus began a learning-curve which we had never anticipated and a dimension to life which has constantly enriched.

An early part of the learning experience is that there are a few well-worn clichés used by people who want to be nice and are looking for the positives. ‘They’re so loving… they’re very musical” or – the one that really has the capacity to irritate – “they do so much for them these days”. Well, yes and no.

We were also alerted to the generalisation that “they have no sense of danger” – totally untrue, as it turned out, in Eoin’s case – and thereby hung quite a funny story. A few months after he was born, we achieved a night out, headed straight for Glasgow Film Theatre and didn’t even look to see what was showing. As a result, we found ourselves watching a Belgian film which doesn’t happen often.

It was called Toto the Hero and the main character’s brother was a wee boy with Down’s Syndrome. By the time it came to the scene where some older kids had persuaded him to climb up on a parapet above a river, from which his siblings were trying to talk him down, we didn’t know whether to laugh or cry about our choice of an evening’s escapist entertainment.

We also found that while there are many wonderful health care professionals, there is also a remarkable minority with a capacity for insensitivity. When Eoin was still a baby, a health visitor turned up with a ferocious looking dental kit on the grounds that “they always have rotten teeth”. (In fact, he has very good teeth). And the only time we heard the word “retarded” was from a doctor. You might hope that it couldn’t happen now, but it shouldn’t have happened 20 years ago either. Hopefully, the training has improved.

There are not many children with Down’s Syndrome around these days. This is not due to the wonders of medical science discovering a “cure” to remove that extra chromosome. It is, quite simply, because well over 90 per cent of potential Down’s births are pre-empted by termination of pregnancy.

My introduction to this reality and the ethos which surrounds it came when Eoin was a baby and I was idly watching one of these day-time television chat shows. The human interest subject of the hour was the latest test for Down’s Syndrome and the improved rate of detection which was claimed for it. (A new “breakthrough” in the field is announced every couple of years or so.)

I began to notice that the discussion was entirely one-sided. Its unchallenged premise was that elimination of potential Down’s births should be an assumed social good. The uncomfortable reality hit me that they were talking about the little fellow sitting on my knee and I couldn’t help taking it personally on his behalf.

As a politician at the time as well as a parent, I voiced my concerns about that approach but it is a difficult line to walk or subject to proselytise on. I am the last person to dispute the right of any woman to make a choice. But genuine choice can only be based on balanced information and there is not a lot of that on offer. An honest presentation of that balance is all I ask for.

The up-side of small numbers could conceivably be first-class provision for the few who make it through the net, but things don’t really work that way. By the time Eoin was born, I had been a Labour MP for four years and one of the strongest impressions made on me was by the weariness and frustrations of decent folk who constantly had to battle with the system in order to secure provision for children with special needs.

“You have to fight for everything” was a phrase etched on my heart.

Most councils want to do the right thing and our own experience of local authority provision, in Glasgow and Lewis, was very positive. Like everything else, a Special Needs system to be proud of needs proper public funding to support it. If the resources are squeezed, then what results will be increasingly geared to budgets rather than the needs of the children.

That is why I cringe when I hear political boasts about council tax freezes or – most perniciously – “abolition of ring-fencing” as if these were benign measures which come at no cost. On the contrary, I know that it is those with the least clout who will always be the first to pay for them through service cuts. And nobody has less clout than people with special educational needs.

When I became Scottish Education Minister in 1997, it was one of my ambitions to address at least one area of recurring despair – the post- school transition for youngsters with Special Needs – and I did so by setting up a committee under the chairmanship of Robert Beattie which produced a magnificent report, much of which was subsequently acted upon, particularly in relation to Further Education College provision.

In 2004, a notably upbeat review by Her Majesty’s Inspectorate found that “almost all colleges had undertaken significant developments to promote inclusiveness in terms of the Beattie agenda”.

One of the reasons I retain great respect for the FE sector is its willingness to accommodate every ability range within society but it too is an easy funding target when times get a little rough.

Once again, the wheel turns and we seem to be going back rather than forward. A survey conducted this session by the Scottish Disability Coalition found an entirely disproportionate 34 per cent cut in the number of part-time places for students with learning disabilities in Scotland’s FE colleges while only 14 per cent of people with these challenges are in work or training.

So “they”, in truth, don’t do all that much for “them” these days and let’s not pretend otherwise. There are still the same challenges, still the same worries for parents about what lies ahead.

A society that respects diversity could be doing a whole lot more. Fortunately, on the other hand, “special” means exactly what it says – and that is what we will be celebrating this weekend.