On being a 'glass child'

I am (or maybe more accurately was) what is known in modern parlance as a ‘glass child.’ For anyone not familiar with the term, it means the sibling of a child with chronic illness/disability, made popular in a TED talk by Alicia Maples in 2011. The description ‘glass’ comes from the idea that those children can be ‘looked through’ or not seen by their parents who are understandably hyper-focused on the child in need. When I first heard the expression, I wept.

When my sister, Susan, was born in 1969, it became clear quite early on that she wasn’t developing at the ‘normal’ rate. She also had a distinctive cry, more like the sound of a mewling cat than a baby. It took a few months for her to be diagnosed however. Passed from doctor to doctor, it took a specialist who just happened to have heard of the rare chromosome disorder, Cri-du-chat, to realise what was going on.

He then gave my parents a very 1960’s piece of advice; ‘have another child,’ they were told, ‘as quickly as possible, because this one will die within eighteen months.’ I was born a year later, and Susan and I are 55 and 53 years-old respectively. She now lives in an assisted living facility, with full time carers.

Susan is hilariously funny. Her laugh is infectious, and she loves anything slapstick. Her favourite thing to do is colouring-in and hiding her pencils from her carers in all manner of imaginative places. She is stubborn, and if she doesn’t want to do something, no amount of cajoling will convince her. She is vain, loves make-up, nail varnish, and having her hair brushed. She cannot walk, go to the toilet, eat, dress, or function in the most basic of ways without considerable help, which she has 24-7. She can communicate using some Makaton, but it is limited. You mostly get to know what she wants and needs through knowing her. She also love in its purest form. Her affection knows no bounds. She has taught me a lot about that.

Understanding of, and care for people with learning disabilities as severe as Susan’s has come a long way since we were growing up. My parents pretty much had to muddle through, and it was heartbreakingly, excruciatingly hard, until they found some respite care, when I was in my teens. Apart from some notable exceptions - Susan was in hospital a lot and there was more than one occasion when we didn’t know if she would survive - I don’t really remember it like that. What I remember is us playing together and laughing a lot. Even now, I can always make Susan laugh, and likewise.

I always saw the things that come with being a ‘glass child’ as positives. For example, it was in order to keep me occupied and quiet that my mum first bought me books. My love of reading began early and was encouraged as a consequence. I was also left to choose my own subjects at school, and to study in my own way and at my own pace, something which allowed me to explore creativity in the form of art, drama and music as opposed to being forced down a purely academic path. I often spent weekends and school holidays with other, accommodating families, making me (naturally introverted) more sociable and adaptable. When I left home at eighteen, I had none of the homesickness or fear that many of my friends had. I’d been looking after myself for years at that point.

But of course, there were and are other consequences. Why would I weep on learning there was a name for people like me otherwise. I will never know how much the mental health struggles I’ve had over the years are intertwined with my childhood, but it’s less than you might imagine I would guess, though no doubt it had an impact (mental illness is rife in generation after generation of my family, I suspect it’s in the genes). I do know though, that my complicated relationship to the idea of ‘family’ and my often-distant relationships with both my parents can be traced back to those years, as can my unwillingness to rely on anyone else and ask for help, but, as I’ve said to many a therapist, I like being hyper-independent. I chose not to have children for this very reason.

Which leads me onto why I am writing this. It has been creeping up on me for a while, but this week I can no longer ignore the fact that my mum’s age and health mean I am going to need to assume responsibility for the many care/health/life related decisions around Susan. And I am frightened. It’s a world of social workers, health visitors, care homes and mind-numbing bureaucracy.

I know I can do it. I’ve had to intervene on more than one occasion, e.g. when the DWP insisted on trying to ‘assess’ Susan’s ability to work every three years under the last government (I succeeded in persuading them that the idea was ridiculous in that instance), but it’s something I find incredibly emotionally challenging. This is followed closely by crushing guilt and self-judgement, after all, thousands of people do it full-time and unpaid for family members, and it’s not about me, it’s about Susan.

I’ve sat here for the last half an hour before starting this next paragraph, because I usually like my Sustacks to follow an arc, and at least to end on an upbeat note (ever the storyteller) with what I’ve learned, or how I’ve turned whatever it is around, but that’s not where I am today. Today I am scared. I’m not even sure why I’m writing about it, expect that this is always my way of making sense of the world, and managing big feelings. And these are some big feelings.

I’ve reached out to a couple of writer friends who are in similar situations and am almost relieved that they both immediately said ‘yeah, that’s really hard.’ But one thing I DO know (thank you Alcoholics Anonymous) is that ‘I can live through this day only, and not tackle my whole life problem at once.’ So that’s my intention. To take this one day at a time, and not believe that how I feel right now is how I will always feel. And to remember that at the heart of this is the most perfect person I know. My sister, Susan.

Photo credit to Paul Sanders