Talk

Advanced search
KiranMumsnet (MNHQ) Tue 19-Jul-16 15:12:41

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

Henny Beaumont thought she was expressing the unspeakable when she wrote about how she coped with her daughter's Down's syndrome diagnosis

Henny Beaumont

Author and illustrator

Posted on: Tue 19-Jul-16 15:12:41

(27 comments )

Lead photo

"I became acutely aware of how insensitive attitudes towards disability were."

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.

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 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.

By Henny Beaumont

Twitter: @HennyBeaumont

Owllady Tue 19-Jul-16 17:22:51

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 smile

user1468507418 Tue 19-Jul-16 18:08:34

Hi thank you so much for writing. What you say doesn't sound negative , just truthful. Your story resonates strongly with my own. I found it very tough getting the right support and dealing with the confusing feelings i had about my daughter. It's difficult to do justice to the complexity of those early emotions here.
I basically spent 4 years drawing and writing exactly what you've so eloquently described above in one paragraph! @owllady

AYD2MITalkTalk Tue 19-Jul-16 21:17:39

I hate "Down's person" too. I still remember, years and years ago, seeing a headline in a paper saying "Down's boy blah blah blah" - it was about an 18 year old man! angry

user1468507418 Tue 19-Jul-16 21:47:35

Me and Beth doing selfies. Henny x

AYD2MITalkTalk Tue 19-Jul-16 21:53:04

You look so lovely together! You're very alike.

Also, envy of Beth's eyebrows.

callherwillow Tue 19-Jul-16 22:13:36

That is a lovely picture smile

Beth looks like great fun! grin (and she does have gorgeous eyebrows!)

user1468507418 Tue 19-Jul-16 22:31:00

She's got much better eye brows than me. This is us at my book launch. She did a speech and signed all the copies!

zzzzz Wed 20-Jul-16 07:57:02

Interesting and uncomfortable to read an experience and reaction so different from my own. Helpful though to realise that others may be facing different demons.

user1468507418 Wed 20-Jul-16 12:23:01

What was your experience? If you don't mind me asking.

zzzzz Wed 20-Jul-16 12:54:32

I think overwhelming terror about what his life would be like and how I could keep him safe.

That filled several years. grin

user1468507418 Wed 20-Jul-16 13:07:55

I had that terror too, but muddied by ambivalence and a dose of depression.Tough times.

zzzzz Wed 20-Jul-16 16:17:21

We've had lots of great discussions on here about person first language and its impact, perceived impact and relevance. I'm back on the fence really.
What I do think is important is to realise that our "truth" is not a universal (or even fixed) truth, and that's where sharing your feelings can broaden understanding.

user1468507418 Wed 20-Jul-16 17:01:09

Ii think it's important to respect the wishes of parents and child. So if a preference is stated, then that's what you go with. I have been in a situation ( which I illustrate in my book) where someone decided that calling a person with Down's syndrome a Downie, even though I objected was reasonable.
Because people with Down's were initially classified as Mongolian idiots and people called each other mongs at my school ( meaning idiot) using the 'wrong' word becomes very emotive. It taps into the culture of not treating disabled people with respect. Forgive me if you have covered this, it's is my first time on a discussion board!

zzzzz Wed 20-Jul-16 17:09:36

Hang around, you will like it.grin

Some words press my buttons but I have no problem with "I am autistic" as apposed to "I am a boy with autism". I use both pretty interchangeably now, but "he's an auty " would sound odd to me.
I always say "has epilepsy" not "is epileptic" confused

FluffyPanda Wed 20-Jul-16 17:19:18

Place marking to read later. No time now

user1468507418 Wed 20-Jul-16 18:33:16

Bethy would like you to see her cat.

callherwillow Wed 20-Jul-16 18:56:10

She likes cats? This girl is awesome.

I hope you'll stick around, OP. I like you, and Beth grin

user1468507418 Wed 20-Jul-16 19:24:39

Will do. Thank you! X

user1468507418 Wed 20-Jul-16 19:27:43

Here's the cover of my book. It's my painting of Bethy when she was about 4

Owllady Wed 20-Jul-16 19:52:16

See I have said is epileptic <shrugs>
Tbh if I'm dealing with a complex child with epilepsy 24/7 I would resent someone picking me up on it. But I'm as grumpy as hell today grin
Your illustrations are lovely Henny. How old is your daughter now?

PolterGoose Wed 20-Jul-16 21:33:15

Message withdrawn at poster's request.

zzzzz Wed 20-Jul-16 22:26:47

My son has autism/is autistic. When he was younger and less verbal and I struggled to make people see his humanity I was aggressively pro person first language. Now he is older, more verbal, and in some ways more "noticeable" I find it matters less. I'm not sure if that is because I am embracing the word, or if he needs less protection from those who want to deny his humanity because he so obviously IS a boy with many similarities to other boys.

I don't have a problem with epileptic, but it is true that I say "has epilepsy".

user1468507418 Thu 21-Jul-16 07:12:30

I think that's so interesting. As I became more comfortable with Beth's disability, I became much more relaxed about language and aware of intention. So if someone got it 'wrong ' and said Down's person if they were essentially being kind it didn't matter. Not to the same degree anyway.
I'd also be interested what adults with Down's preferred ?

zzzzz Thu 21-Jul-16 07:57:57

On the Epilepsy wording I wonder if it is because it came later (ie dd was here without epilepsy first) and so it seems that it IS an add on to her IYKWIM whereas ds was born different and so that is less my perception (though this is confused by the fact he has very easy days and very impaired days) confused.

Language is for me a HUGE indicator of how people feel about him and us and disabilities place in the world.

I feel like I am distracting from your book though OP. Come and waffle on the board if you've a mind to. Lots of different takes on things and some fascinating ideas to ponder as I pander to my young. grin

Probably best to get a more wordy username, the ones with numbers on can sometimes be trolls so something more easily remembered/written will make people more comfortable.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now