Loving care, caring love

The phrase “disabled carer” risks eliciting gushing and inappropriate responses. But for Alan Sutherland and his partner, care in every sense is just part of life

I met my partner Victoria through the Campaign for Accessible Transport. We spent many happy hours together reducing London’s West End to gridlock with sit-down demonstrations demanding access to buses. We annoyed a lot of motorists, but wheelchair-users can now catch the bus into town.

Back then in 1990 Victoria walked with a stick, though it seemed obvious to me that she would benefit from occasional use of a wheelchair – an issue that resolved itself as soon as she realised how much easier a wheelchair made clothes-shopping trips.

Like many disabled couples, we supported each other’s access needs. There was one appalling month where a new medication lost control of my epilepsy. I was having two major fits a day. I don’t remember much of that time. But I do remember that there was someone looking after me for the whole of that period.

Since then, things have gone the other way. My fits are now entirely under control, while Victoria’s MS has continued to advance. Imperceptibly, the balance of dependency has changed, and I find myself my partner’s carer.

That doesn’t mean I dress her or wipe her bum or put new dressings on her pressure sores. Mostly, that’s done by agency care workers and district nurses, except when we go away on holiday or have a crisis in the middle of the night. This means that we can have a physical relationship that isn’t dominated by incontinence but does bring a constant procession of passive-aggressive women through our home. For them it’s a workplace, and the only relationship of any importance in it is the care relationship.

So, for example, the woman I love sleeps on her own in a hospital bed. It was only when we shared a bed together again on holiday that I realised quite how much tenderness this had robbed us of. But when I have talked about getting rid of the thing, nurses and carers have threatened to withdraw services. They need it to protect their backs from injury, they say. Protecting our relationship doesn’t come into it.

It’s at times like these that a good grounding in social model thinking is invaluable. Problems are solvable. Though assured by OTs and nurses that no such thing existed, I’ve sourced a height-adjustable double bed that actually looks like part of an elegant home and am currently redesigning the bedroom to fit our needs.

There’s a subtle pressure from nurses and care workers for Victoria to be a good patient, meek and compliant and grateful for their attentions. But if I have anything to do with it, the stroppy, independent woman I fell in love with will stay as she is.