Whose love is it anyway?

Who has the power to decide what a disabled person can do with their life? Of course the answer should be the disabled person decides. But what if we need others to assist us in carrying out our wishes? Simon Parritt asks who chooses then, whose rights and interests are paramount?

John is a man in his mid-50s. Having lived abroad with a son and wife, he now finds himself, after becoming disabled, divorced and transported back to his mother’s house in the UK where he has spent the last 12 years being supported by his now elderly mother and family with a care package in place.

In this true story, one day Mary, a care worker around his age, arrives and they form what is at first a close bond and this then turns into a romantic attachment.

This is not unusual. Isolation and restricted opportunities means that many disabled people don’t get much of a chance to meet new partners. Added to this most of the non-disabled world rarely see us as potential lovers or partners. Carers are supposed to remain “professional” and never get involved with their clients. But in the real world of relationships and attraction, rules are not so easily kept to.

Mary falls in love with John. But John’s family is horrified. They report Mary and the “inappropriate” relationship and she is suspended whilst the agency establishes nothing unethical had occurred. Satisfied that nothing has happened other than an emotional bond has developed between them, she is reassigned to a new client and then continues to see John as a friend and potential partner after work and when she can. However, she is then barred from the house and all contact with Mary or mention of her is denied to John by his family.

This could be a story about how isolated some disabled people are that they only find opportunity for friendships and love within the closed world of their carers. Or, this could be a story about how, after many years, a disabled man has become so much a part of his family’s way of life that they can’t or won’t let go. It’s a familiar situation when a mother doesn’t approve of their son’s partner or girlfriend and do everything to keep them at home. But, of course, when a man is 18 he is free to choose, free to walk away and, most importantly, free to make mistakes.

For John no such luxury is available. He is physically incapable of walking out of the door into the arms of his love. He is too dependent upon a whole package of support and a hundred “sensible” reasons can be put in the way of why he should never see this woman again. Some may be right, some may be wrong and mostly it is impossible to predict.

He is in this position because of his impairment. He is truly disabled by the system which denies him the same freedom to choose as any other autonomous free individual. He has to risk everything in the face of those who know best and tell him he is not able to make a decision. He needs the kind of bravery that few isolated, dependent and vulnerable people manage to muster.

So, right or wrong, a lover awaits him, an adaptable flat awaits him and a woman who says she loves him awaits him, but he cannot move, he dare not act. His immobility is not just physical. He is trapped in a life where his continued dependency is the “raison d’etre” of others, especially his family. Where his continued safety is the concern of social services. Where he may feel obliged to be silent in the face of those who “know what’s best” for him.

The outcome? In this case, it’s yet to be determined. But the wider issue is about how often is this scenario played out in disabled people’s lives? How often are we free to act on impulse or on our hearts desires and to hell with the consequences? Are we really afforded the freedom that non-disabled people have to act on our own decisions when we need others to enable us to act? Whose rights are paramount? Ours, or our enablers? How are disabled people to learn to grow and develop emotional maturity and strength so that we can break the silence and demand our right to choose, even in the face of what others feel is wrong or destined to fail, just like everyone else.

• Names have been changed