A recent report by the RNIB found that two-fifths of participants reported changes in family dynamics following their sight loss. Just as in bereavement, families often rearrange themselves around grief, so even the closest of relationships can be affected by the grief of sight loss, and some bonds are weakened while others may be strengthened.
Parents and children, in particular, can notice big shifts in their relationship. This is because this relationship is intertwined with the dynamics of caregiving and care-receiving, and these may move around a little when sight loss occurs. The parent of a child with sight loss may find themselves compelled to ‘help’ or ‘take care’ of them, to an extreme degree, even if the child is an adult, and even if the adult child is more than capable and hasn’t requested help! This can lead to frustration and feelings of disempowerment on the part of the VI person. On the contrary the child of a VI parent, especially when the sight loss occurs or worsens later in life, may find it hard to adjust to the new situation, may be categorically unhelpful, and may even appear to ‘forget’ about the parent’s disability. This can of course lead to a different kind of frustration for the parent, that of not being listened to or understood, or even being seemingly ignored. The fact is that most children (however old they are) prefer their parents to remain constant (and ideally invincible!) and what is probably happening is that the child is struggling to come to terms with the change.
In the zoom meeting this week, Eyematter members shared their own unique stories of shifting family dynamics. One thing everyone agreed is unhelpful from family members is the comparison comment: ‘it could be worse’ or even ‘X person is worse off than you’ – the result being that your difficulties are minimised and you may have learned to mask your feelings as a result, which is not a good ingredient for a healthy relationship. Interestingly some members shared that while their parents or adult children may have been unhelpful or in some cases even harmful in their response to the sight loss, they found champions and allies among the wider family, typically a grandparent or a grandchild, and it’s there that the stronger bonds were forged.
These are the positives to be celebrated. It seems a common, and heartening, theme that younger relatives, especially small children, are incredibly adaptable, curious, and accepting. Nurturing these relationships is so rewarding and maybe gives us hope for a future society that will be more understanding and accommodating around disability.
There is also the wonder of ‘found family’. They say you can’t choose your family and while that’s true, you can choose who you surround yourself with and where you put your energy. If a relationship is draining you or causing constant disappointment, there’s no shame in sidelining that relationship, no matter who they are, in favour of connections with people who build you up, encourage you, and understand or at least seek to understand your experience. That’s why communities like Eyematter are so valuable; the first step in having fulfilling relationships is finding your tribe. Family members may catch up in time, and hopefully they will, but good friendships can meet your needs just as well.
May you find your tribe – and take care, until next time, JW