One of the things you get used to, when one of your children has Down’s syndrome, is being asked a lot of questions. They can be anything from the sort that come from officials and questionnaires about his ‘needs’ (like, how am I supposed to know when it is a new situation and I’m not there?) to the most common of all, accompanied by the sympathetic head-tilt and sing-song intonation of, ‘did you know?’
The did you know question became so ubiquitous when Sam was younger, a soundbite comment on the public nature of motherhood, that I became sorely tempted, in the faintly hectic way of the sleep deprived, to answer through dramatically bared teeth, ‘No, I ordered him from the baby shop especially because I fancied a more complicated and difficult life, thanks for asking.’ I never did, but my friend Meg and I used to laugh about it. We’d decided that laughing at the world and its judgements and opinions was a better option than the alternative, which was to drown in a sea of self-blame and fear for the future. So laugh we did, imagining all the shocked faces at our reply.
The thing that always gets to me though, the poisoned dart hidden deep within that question, is the underlying assumption of choice. We like to think, in our 21st Century Western way, that we have a lot of choice, as if we could indeed go into a shop and point at the baby we wanted, the one that satisfied our list of demands, as easily as that. But, of course, there is no such shop, and no such easy choice. The best we can do is offer some sort of selected screening. We set the criteria, genetic trisomies, duplications, serious diseases and disablements, and we screen; a blood test, quick and easy, but hardly painless.
Again and again I find myself questioned, this time upon my position (because, it seems to question why a woman might choose to act as she does, to make a smothered request for the kind of surrounding circumstances that enable women to make an informed choice, is not the sort of question I should be asking) and I think it comes down to one idea, one fundamental notion; to serve.
Which brings me to my point about selection. In edu-land this year there has been a lot of handwringing and wailing (these are technical terms, you know) about the possibility of a re-introduction of grammar schools. ‘We are giving parents more choice!’ declared the politicians. ‘You can’t choose a school that works on the basis of selection!’ replied the critics. The argument went back and forth for the best part of the last year, and, when it turned out that after the General Election the government would not be able to carry out its plans, there was a collective sigh of relief.
However, and here is the thing, selection, whether we like it or not, is already present in our education system (and I’m not talking about those areas of the country where we have grammar schools surviving). It’s not necessarily an explicit thing, not by any means, but it is there. You only have to step through the school door with your disabled child and you run slap-bang into it. ‘You have to think about what They take away from the others’, ‘They do special needs much better than we do’, ‘We can’t meet his needs because of *insert safeguarding/stairs/toilets/staff/whatever reason here’; the comments fall on your ears and enter your heart thick and fast. Putting it simply, when schools set conditions on the kind of children – or the kind of parents, even – they welcome, formally or informally, selection is in action, just as when you set criteria on what kind of baby is an acceptable one to join your family.
Some schools are better at hiding it than others. Some schools are honest and up front. Whatever it is, it means that while we might say that on the surface that we have an inclusive education system, in practice I am not so sure.To me, there is an aspect of taking life as it comes versus the desire to control. Our humanity ensures that life is not some sort of perfect set of events; there are frailty, mistakes, unhappiness and joy along the way.
There are great schools around the country whose head teachers subscribe to the premise that the local school serves the local community, who take life as it comes (we sent our children to such a school), but I am tired of the pretense that this somehow means that everyone works to the same high standards. I am tired of the educational rejection, formal or informal, through the setting of selection criteria dressed up in the language of choice, of disabled kids with imperfect parents and fallible families. I am tired of the way that great inclusive schools act as magnets in their area, because families know that at least there, they will be welcomed; of the way that it is not acceptable for bakers shops or hotels to choose their customers, but somehow OK for schools.
It makes me wonder, when all is said and done, just who we are serving.