For seven years, my daughter went through the school system struggling with the hidden disability of hypermobility syndrome. It didn’t affect her every day but even in primary school I remember her being laid up for a week with the condition unable to walk for a week with the pain and missing a whole week’s school as a result. Then the head teacher rather than work towards a helpful solution for her hidden disability simply labelled her as an unreliable child and punished her by telling her that she would no longer have the lead role in the school play and stripped her of that honour!
A few years down the line, she missed more school again, this time as her hidden disability played havoc with her fingers. She was taking Music GCSE at the time and was unable to fulfil the teacher’s timetable in the first year with regards to her performance assessments due to massive swelling in the joints which prohibited her playing her flute. Again rather than work to a solution, the teacher complained, in her absence to the rest of the class, about the nuisance that she was and disadvantaged and discriminated against her for the rest of the course. In fact, in this case, it was only a caring sixth form lad that actually taught my daughter the GCSE music basics and got her through the course for as a result of missing lessons from her disability, my daughter remembers not only the humiliation that this music teacher put her through with the unkind back comments but the exclusion from many of the core elements of class lessons as again she was punished for being “ill”.
Finally, through sixth form, little support ensued and eventually two terms before the end of the two year course, we took the decision to take her out of the system without telling the school so that she only attended school for for core lessons and other basics as necessary. The school didn’t notice or certainly never questioned her absence. She had asked them if it was possible to study during “free” periods at home originally but they had only granted an extra two hours and again showed a poor understanding of student requirement ignoring the real issues and focussing on the problems with no sight on the solutions. However, without systems in place to monitor student activity, a lacking sixth form administrator and poor support systems in place it was a gamble that ended up playing off as she was able to access full support systems out of school, focus on solutions and her grades soared from average to exceptional from C’s to A’s in module results.
Now looking to the future she is heading off to university with a full support package assisting her en route. Her DSA (or disabled student allowance) will help make the transition into student life as easy as possible but more importantly will support her studies through the next three years. Careful assessment of her needs have not solely been problem centred but solution focussed to ensure that no detail, too small, has been overlooked in an attempt to help her fulfil her full potential and if anything has been missed then a call to the correct services will reassess and re-measure her needs. Critically though, she can look ahead with excitement secure in the knowledge that she can start to carve her own future with a lighter load, rather than dragging the baggage of those who said that the “every child mattered” but left us asking the the question “did they really”.
Every child does matter as much as every person matters – disability doesn’t define us and those with a hidden disability should not be discriminated against just because their condition isn’t visible. The key is to find out what support is available, to access that support and help in an attempt to be solution focussed and in doing so look to giving flight to and fulfilling that latent potential within each and every one of us