‘It’s not fair is it? You did everything right.’and other stories.’ Part 2.
‘She won’t do her exams and she’ll have to live in supported accommodation’
Lucy’s future in one sentence delivered when Lucy was six weeks old.
This one made me mad and sad at the time and it makes me mad and sad now but the reason has changed over time.
I recognised and talked at the time about how this reflected more on the practitioner delivering the news than on Lucy. It reflected her ideas about a good life more than providing any information about Lucy’s future that may actually prove useful. I still harboured a hope that she would be proven wrong though, that Lucy would be the exception, that she would have some kind of super mild version of Emanuel Syndrome that meant she would do ‘her exams’ and that she would live an entirely ‘independent’ life. I can look back now and know that this was my hope. I can also look back though in the knowledge that what practitioners might term ‘unrealistic expectations’ was in fact an important protection that I needed. In order to get through the reality of the day to day I protected myself with a story about the reality of the future. Joanna Griffin writes about this in Day by Day: Emotional Wellbeing in Parents of Disabled Children, ‘by not fully acknowledging the situation, or thinking too much about the future, it enabled me to carry on with the day to day demands of having a baby and feel less overwhelmed.’
So what would have been a better way to deliver the news? Thankfully I have a comparator. We had the diagnosis twice. Once in a calm office seated relatively comfortably (the exams and accommodation time) and another sat on the bed of a room in the neonatal ward with a nurse sat on the window ledge and two doctors in the doorway. No escape but into the ensuite loo. Although this time though the physical environment was less than ideal the words were very different. ‘This is very rare, we know she will have difficulties in a lot of areas but there’s lots we don’t know. We’ll work with you while we learn.’ (that’s actually a paraphrase as in this case there were not particular words that stuck with me but I know this was the message). I remember my husband’s response though ‘Well, welcome to team Holmes’.
However the news was delivered, the fact remains that growing with a whole extra gene is pretty disruptive to our ideas of typical development. And that’s how over time my thoughts about this statement have changed. That these were the important things to convey to the parents of a six week old does not just reflect this practitioner but the world as a whole. We see and value people in terms of what they can achieve- and what we mean is how they can develop skills and earn qualifications that will make them economically active and part of the workforce. We uphold independence as a goal when we are none of us nearly as independent as we think we are. Do you grow your own food, work alone, do you use a computer, have someone else cut your hair… daily we are dependent on the lives of others and in turn others are dependent on us. We are interdependent, not independent.

Four arms are interlaced with symbols of a number of people and a wheelchair in the middle.
Support Symbol Government of Aragon used under Creative Commons BY NC SA 4.0
I have met a lot of teenagers over the years going through that phase of life when ‘doing their exams’ consumes their lives and thoughts. I also know that, while not unimportant, exams are a snapshot of one small part of a life with the function of getting to the next opportunity. They are not what makes a life. I also know that being in community, sharing space and giving help as well as being helped are some of the most nourishing and important parts of life.
Maybe it’s time for a reframe: ‘she won’t have to do her exams and she’ll get to live in supported accommodation’.
2 Responses
I hate the emphasis on exams here! Many people seem to accept the assumption that children should work non-stop. I heard someone on the radio saying that her husband worked eighty hours a week to send their child to private school. Perhaps the child might prefer to see their Dad? My point here is that quality of life is important in childhood too.
Absolutely… and it’s about what we value in people. Do qualifications increase our human value? I don’t think so. But I have to wonder if I did in the past and I know I’ve grown in a system that values learning and productivity.