“Don’t ever think that parents get used to having a child with a disability”

Those were the two sentences that defined us. Not immediately, but over time they turned Frieda and me into often reluctant, usually frustrated, and frequently very angry members of the disability movement.

We don't have a disability, either of us. At least I don't think so. But we have frequently been spoken to by experts in words of one syllable. We've sat in front of them with that sinking feeling, the realisation that this person thinks we're not the full shilling. We've been patronised by politicians, had all sorts of assumptions made about our backgrounds (particularly the assumption, which has only sometimes been true, that we are "socio-economically deprived"), told that we had been given a special gift, and promised the sun, moon and stars by every Government minister we've ever met.

What we do have is a daughter with a disability. Mandy, to be precise, now 29, with Down's Syndrome. It's an incurable condition, but that didn't stop the system calling her for an annual check-up in case we had found the cure and were keeping it to ourselves. Its essential symptoms are a dulling of the central nervous system children with Down's Syndrome are hard to tickle and they don't feel the cold or heat as much as other children and mental handicap. Or learning disability as we have been taught to call it lately. (That's why they talk to us slowly and carefully a lot of the time. Over the years we have come to realise this is part of the subconscious training of experts, this tacit assumption that if your child has a mental handicap, you're probably a bit simple too. The fact it has no relation whatsoever to the truth doesn't prevent an awful lot of "professionals" imbibing it.)

Whatever label we apply now, I didn't know what to call it when Mandy was born. In 1972, in the middle of the summer, Frieda had gone into hospital for our first baby, not knowing anything of what was to happen. I went too, but was told I would be hanging around for hours, as a first labour can last for ever. So I left the hospital, leaving the number of a friend's house so I could be called when things started in earnest.

Things started in earnest almost as soon as I left. Frieda was told the baby was very distressed no reason given and an immediate Caesarean section would be essential. She was whipped up to the theatre, on her own, and anaesthetised. Whoever was minding the phone number I had given them forgot it. And Mandy was born with her father missing and her mother all alone and very groggy.

Maybe that was why they decided not to tell anyone that night. They knew immediately, of course, in the hospital. What we saw was a beautiful, delicate, porcelain doll, looking oddly Japanese because of a slight case of jaundice. But so beautiful. We didn't know the tell-tale signs they know the floppy muscles, the flattened nose, and the fact that Down's Syndrome babies, strangely enough, have only one lifeline right across the palms of their hands.

Anyway, they told me the following day. A nurse was either deputed to do the job or took it on herself.

"Mr Finlay, I'm sorry to have to tell you that your daughter has Downs Syndrome."

"Oh right. Is that serious?"

"Well do you know what Downs Syndrome is?"

"No, I'm afraid I never heard of it."

"Well, have you ever heard of mongolism?"

And then I knew. But I still knew nothing. A doctor would be able to explain it to me. But it was Sunday, and he was terribly busy (yeah, right). I would have to make some sort of fist of telling Frieda myself.

Nowadays, Frieda often talks to experts at least, when they are being formed, as students, she and some other parents try to get through to them that these are all issues that affect people. They do it by telling their own stories, and this is how Frieda has described her own reaction to the news of Mandy's condition in one of the talks she has written:

"When I was young, I was scared of people with learning disabilities mentally handicapped people as we called them, or even mentally retarded people.

"They really frightened me. As I grew older, I was less scared, but also, I couldn't care less and I certainly wasn't planning to have anything to do with them. During my first pregnancy, I had dreams about my wonderful child, and all that he or she would do and be. I had an emergency Caesarian section, so I was told Mandy had Down's Syndrome before I saw her.

"All I could imagine through my shock was a wizened, shuffling, snotty-nosed, young, old-looking adult. My life was shattered, my rejection was instant; I was scared of my monster baby. Of course, I had never seen a baby with Down's Syndrome.

"When I saw her, she looked quite beautiful, like a little doll. But that was no consolation. I felt imperfect, and not a proper woman. I wanted to hide her. There was something wrong with me what would people think after all, if I had all these attitudes about people with a mental handicap, weren't people going to have the same attitude about me and my child?"

Some did have attitudes, of course. Not the doctor we eventually got to see. He couldn't have been more casual, more laid-back, more brutal. "Just take her home. She'll never amount to much, but she shouldn't cause you too much trouble either."

Over the years, though, Mandy caused a lot of trouble. Bits of pain too. Here's Frieda's account again:

"I can also remember when she was a toddler, the first time we took her for a walk up Killiney Hill. I think every bouncing healthy child in Dublin, from one to 12, was out there that day. And it hurt. Again it brought home the reality of my situation. You live coming to terms with it every second day.

Don't ever think that parents get used to having a child with a disability. We don't. We develop enough scar tissue to stop us bleeding in public, and to carry on some kind of normal life.

Even though I have been campaigning for many years for her rights, and shouting about the importance of equality, it was only recently I realised how equal my daughter really is. It is very important to understand how we perceived our child who has a disability.

Two years after Mandy I had another daughter, yes, she was perfect, then my third daughter was born, again it was, 'How is she, she's perfect', what a relief.

And so with my fourth daughter, 'yes she's perfect too'. Now, those three beauties range in age from 25 to 22 to 19, and I can assure you they are far from being perfect! On that realisation I now see my daughter Mandy in a very different way."

But that took a long time, for both of us. Unconsciously, we blamed her for her disability. We blamed her for the fact that other kids were making better progress, were walking and talking before Mandy. We blamed her for the pity we seemed to attract, and even, as she got older, for the fact that her identity in some ways was stronger than ours. We were the parents of the Down's Syndrome girl.