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Guest post: "My daughter made me face my own prejudices towards disability"

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KiranMumsnet · 19/07/2016 15:12

When Beth was born I was horrified. I thought my world was over. The family I imagined I was going to have – three gorgeous little girls – was completely destroyed by my daughter's diagnosis of Down's syndrome. I remember thinking that birthdays, Christmas and family holidays would all now be ruined by Beth's presence; her Down's syndrome would somehow contaminate it all.

When Beth was four days old, life was complicated further by finding out she had a serious heart condition that needed surgery. We didn't know whether she would survive and the surgeon asked us to watch her in case she turned blue and had heart failure. I was already reeling from her diagnosis and this additional difficulty pushed me very close to the edge.

I found it almost impossible to love her as a baby, partly because of her disability and partly because I couldn't allow myself the pain that I would have to endure if she didn't survive. Our doctor at the time told us that we might be comforted to know that she might die before us.

As Beth started to grow up, I began to understand the strength of my own prejudices towards mental disability; the ill-informed opinions and preconceptions I had about Down's syndrome; opinions that I had no idea I held, until I had to face the reality of my own child's mental disability.

At the same time I was learning about Beth as a person, I learnt about Down's syndrome, what she could do, rather than what she wasn't going to be able to do and I became acutely aware of how insensitive attitudes towards disability were.

As well as dealing with my own prejudice, I started to feel that it was very important to explore and challenge attitudes and prejudices of the people surrounding me, the health professionals and teaching staff I was dealing with almost every day.

For a while, I was almost permanently angry. I became very focused and concerned about the language we use to describe disability and I draw on this in the book. I still hate it when people say 'a Down's person', rather than a 'person with Down's syndrome'. It means that you are not describing someone as person first and foremost.

I'm a bit more tolerant than I used to be. I felt a bit sorry for a journalist who recently interviewed me: she couldn't get her head around 'Down's person' or 'person with' and kept getting it the wrong way round. In the book I try to talk about the language of discrimination in a humorous way and mock my po-faced stance.

As a parent you can put yourself through hell on all sorts of levels, by blaming yourself for inadequacies in your children. I sometimes speak to people who are in a genuinely terrible state, because their child has 'failed' in some minor way, socially or academically: not been invited to a party or not got the grades. We often see our children's success or failures as a reflection of ourselves, which obviously isn't a problem if they are succeeding, but is not so easy in tough times.

Having a disabled child, I think I had to try a bit harder to separate myself, to ignore the part of me that was determined to blame myself for Beth's disability, and to stop seeing Beth's disability as my reflection. It took me a long time to see her as individual and not as a set of problems – to see her and love her for herself.

Hole in the Heart is a graphic novel about how I coped with the shock of my daughter Beth's unexpected diagnosis of Down's syndrome. I drew and wrote about the difficulty of our journey as a family to accept and love her.

It's been fantastic seeing the press interested in these ideas. But the real highlight is the incredibly touching emails from people who have not only been in the same or similar situation, but also parents of children with autism who have gone through a diagnosis that has been handled in an insensitive way, and parents who have experienced a lack of control or isolation in the educational or health system.

It's been especially wonderful receiving such positives responses because I had been worried that I would upset other parents. When I was drawing the book, I imagined that I had expressed something unspeakable.

Mumsnet has 20 copies of Hole in the Heart to give away. Apply here for a chance to win one.

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Owllady · 19/07/2016 17:22

That's a lovely illustration of you both Helen. My daughter is 16 with SLD/ASD/CP 'etc', a collection of dx rather than a syndrome. I was very grateful in the early days I found mumsnet as prior to that I thought everyone else with a child at the special needs groups were coping and I was the only one who felt constantly sick and on edge. I remember thinking at the time that it would have been better if she had of been born to someone older, more mature, because I was sure at 21 I wouldn't be able to cope with it myself. Obviously I did! But I think there really is inadequate understanding in the early days and very little support for parents to come to terms with something which is massively life changing! Having a child itself is life changing, to have one so vulnerable and have your life become 'public property' is quite another.

I wish someone had of told me to enjoy her more, that it wasn't the end of the world - like I thought it was. She was who she was, she was still my daughter. Grieving is normal though, it's a shame it's not spoken about and its a shame other people expect you to put up a front, whilst slowly isolating you at the same time.

Sorry this sounds very negative! I love my daughter dearly, I just remember how emotionally difficult and complex the early days were :)