I have four daughters, and, boy, have I learned something about puberty. The flying hormones that need constant ducking, the battles, the conflicts, the mood swings – not to mention "you don't understand anything, mum". I've even tried to be cool with my daughters – only to be reminded how ancient I was!
The funny thing is, my first daughter has Down Syndrome, so way back at the start I figured none of that was ever going to happen with her. Mandy would always have the mind of a child and I would always be there to look after and protect her. In fact that was the dark tunnel of her future I never wanted to visit.
But just like every other healthy teenager, puberty arrived with a bang, and she wore her heart on her sleeve. That was about 26 years ago. Well, I had a lot of learning to do, and yes, it took me a while. You see I never thought my daughter would ever grow up to be a woman.
I hope it's different now. I meet a lot of younger parents, and they're brilliant. They know how important it is to educate their child with an intellectual disability before they reach puberty. They talk to them about their bodies and the words used to describe their bodies. They explain how babies are made and how they arrive. And of course there are very good books and courses available now.
But here's the thing I learned from my daughter. You'd imagine I might know something about this as a grown woman, but sometimes it takes the wisdom of someone with a lot more innocence. Sexuality is not a thing of the mind, it is part of what we all are – and it's very powerful. There is no disability here – just human nature.
When puberty arrived without any preparation, sometimes it was accompanied by inappropriate behaviour. Oh my God, we can't have that! Parents and service providers were terrified – if you mentioned education, the usual reaction was "don't open that cans of worms", "leave well enough alone" and "what they don't know won't bother them".
Some service providers in those days used to talk about "some people being a bit over-sexed". Mind you, the more I argued about better sex education, the more they used to hint that I was over-sexed too.
But I learned from direct experience that if people with intellectual disabilities had no understanding of their feelings and no appropriate education, they were vulnerable, and had none of the skills necessary to protect themselves.
I also became aware at that point that people generally, who were usually very accepting of babies and young children with intellectual disabilities, were not nearly so understanding of adults. Especially big adults who are capable of over-enthusiastic hugging or kissing.
When our children are young, we want them to shine to be accepted and included, so we make sure they get out there. When our children become adults we have to help them to grow up.
You can see sexuality flourish in every teenager – but it happens with a layer of religion, attitudes, education, and discrimination. My daughter – unknown to me – got at least some of her sex education from EastEnders, Coronation Street, and movies like Pretty Woman and Sex in the City!
She loved all those shows – and it didn't matter to her that it was much more explicit than we were used to.
In order to accept my daughter growing up, one of the first things I had to change was the automatic way I had of calling my daughter a child.
She was a young adult woman, and that made it much easier to deal with her sexuality – mainly because the notions of children and sexuality seem so wrong together. In order to allow them to grow up, we have to start calling them adults and thinking about them as adults.
And we have to make sure the professionals do so too, and treat them with the dignity adults demand. We also have to change our attitudes to the sort of assessment we do.
We have to assess all the areas of development – and that includes recognising the physical feelings of sexuality. And recognising, no matter how messy it might be, that they have a right to their own sexuality. My daughter has been in a relationship now for a number of years. It has its ups and downs like all relationships.
The government have started putting new legislation through the Dáil, doing away with the 1871 Lunacy Act, which deals with Capacity and Consent. This old Act directly effects people with intellectual disability in many ways not just for the disrespectful language it uses.
Under the present law, when a person with an intellectual disability reaches 18, a parent can no longer make any decisions for their child, and the person cannot make any decisions for themselves. If any major decisions have to be made, they are made a ward of court. Thankfully that is being done away with and assisted decision-making is being put in place. The guiding principals also include a presumption of capacity.
However, another important part of the old Act influenced a section of the 1993 Sexual Offences Act. It was put in to protect people with intellectual disabilities from abuse, but it also made it a crime for two people with an intellectual disability to have a sexual relationship.
Unfortunately under section 106 of the new bill, the current law relating to the capacity to consent required for people with intellectual disability to have a sexual relationship remains the same. The bill does not amend the law, therefore it is still a crime for two people with an intellectual disability in a loving relationship to have a sexual relationship.
If people with an intellectual disability get married, (which they can do), because this part of the law is not being amended, it also means they will not be protected from abuse within the marriage.
This law denies people with intellectual disabilities their human rights, but it also gives some service providers an excuse not to facilitate relationships.
So many lives have been wasted. People were and some people still are segregated in institutionalised residential centres and in group homes, seldom getting a chance to meet people of the opposite sex. There are the occasional discos but that is usually on special days. Relationships are frowned upon, and even treated as a joke.
A number of years ago I visited a large residential institution. While I was walking through a women's ward, I met a little old lady with tousled hair who had lived there for years. She was singing a song. I said to her: "That is a lovely song," and she responded: "It is a love song. I would love to be loved."
It still breaks my heart to think about her. Her skin was dry and I wondered had anyone ever put moisturiser on her face. It could have been my daughter.