Carer and campaigner Nicky Clark reflects on issues of puberty, sexuality and disability, and the importance of supporting teenagers as they make the transition to adulthood.
I was once told that you only realise your ability as a parent when your child becomes a teenager. When your teenager also has learning disabilities, this truth is thrown into sharp relief.
My daughter Emily was diagnosed with autism at three, with epilepsy at ten and she’s now 17. It’s a very tricky balancing act writing about the challenges of caring while keeping rights to privacy in mind, so in writing this I’m going to attempt to address a subject which I think more carers need to talk about.
When you have a learning disabled child, you have a greater reason to fear letting go than people who have neurotypical children. Sexuality is a difficult issue to discuss generally, and when applied to our children it becomes an issue of privacy which must be respected. Just because our children are learning disabled does not negate their rights to privacy, or their sexuality. Yet some carers are often so challenged by the reality of their child’s puberty that
they make decisions around facilitating their child’s sexuality which entirely negate them.
No easy issue
I don’t state that the issue is easy to deal with or to talk about but I do suggest that factoring in this essential aspect of life is required. My daughter is at a residential school and when it became apparent that she was beginning to explore her sexuality, I suggested her carers take her to Ann Summers, so that she could have the correct equipment for this purpose. I was truly horrified to hear that, in the history of the school, I was the first parent to have given permission for this. In a wider context, some learning disabled young adults have ended up in hospital as they had tried to improvise without the correct equipment.
There is a crucial need to recognise the difference between privacy, which is a human right, and secrecy, which is a risk factor with vulnerable people. My feeling is that this shopping trip must be viewed as important as any other health need. Challenging behaviours arising from an unexpressed sexual frustration must be addressed. Imagine if your sexuality was denied or deemed to be wrong just because it exists. This right is no different just because you are born “different”. Hormones are not aware that they are seen by some as inappropriate just because the bodies they inhabit are disabled.
As a society, we sometimes have a problematic approach to sexuality. The tales of parent carers who deny their disabled children any of the aspects of life which we all take for granted make me so sad and angry. These carers are failing at their most basic role.
We need to remember that, as carers, we are advocates first and parents second. Denying your child access to their most basic needs, in lives often already severely restricted, seems cruel and wrong. If your morality dictates this, then you need to recognise that you perhaps need to rethink.
I do understand the safety and the fear and I don’t suggest that every placement is as good as Emily’s but what I’m hoping is that this piece may prompt more open discussions.
I just feel that often, with already huge challenges to face, many carers don’t factor in issues until they have to. Tragically, the issue of sexuality is also not faced sometimes until things go wrong, either with an unplanned pregnancy or a vulnerable person being manipulated by those with cruel intentions.
If the issue is faced honestly and communicated well, this can be a step towards our vulnerable children understanding the parameters of appropriate and inappropriate behaviours from others; another reason why privacy and secrecy must be fully explained.
Talk about it
Shame is also to be avoided. Some carers are unwilling to face the reality of their child’s growing awareness and interest, and defer this fear and punish their child with shame and guilt. Whether your child is learning disabled or not, conversations around sexuality can be fraught.
When you are a carer, you have control over your teenage child’s burgeoning sexuality, in terms of them being able to access equipment and information which they need. They can’t access this via the routes open to non-disabled children yet their need is equally strong. If you have the opportunity to facilitate this and you refuse, then you have failed them in another step of their crucial learning process.
Not every learning disabled person is straight and this can be a further challenge for some carers. The realisation that your child is gay further compounds an already tricky subject but this is no reason to deny their needs. Realising that you are LGBT is challenging enough, due to bigotry. If your home life is one which denies open communication anyway, the addition of communication problems due to a learning disability is an another
barrier to understanding that your sexuality is entirely normal.
As carers we need to be sensitive to our child’s needs and the fact that our own prejudices are just that. Our beliefs are ours, not our child’s, irrespective of the moral code you determine for yourself. This does not facilitate advocacy. It does the opposite.
As our children grow, their sexuality is a fact of life which needs to be faced, dealt with, facilitated and then resolved. If you are involved in this, if your permission is sought or if the issue manifests itself in other ways, then we need to do all we can to be the best parents or carers we can be, at one of the times in life when we are needed the most.
Nicky Clark is a mum to two girls, carer of twenty years, blogger, disability rights campaigner and standup comedian. Read more of Nicky’s work at www.mrsnickyclark.com or follow her on Twitter, @mrsnickyclark
Enable Magazine, July/August 2014