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Downs article in The Mirror

12 replies

Rhubarb · 19/09/2003 09:57

Just thought I would tell you all about a lovely article in the Daily Mirror yesterday (my dh buys it, not me!). It's about a woman with Downs Syndrome and how she lives a very fulfilling and independent life. It's such an uplifting article, I'm going to send it to my sister. I don't know if it's available online or not, but if it is, it is worth viewing!

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Rhubarb · 19/09/2003 10:27

Just looked in the Daily Mirror site for a copy of the article and cannot find it, which is a shame. But the upshot of it is an interview by their medical correspondent with Anya Souza who is a 40 year old stained-glass artist who happens to have Down's Syndrome. She is quoted as saying "Yes, I have Down's Syndrome but I don't suffer from it." She was bullied at school but says that was more because she wore glasses, rather than having Down's. She left school with 3 CSE's and went to college studying office skills and then catering. She now lives with her long-term partner, runs her stained-glass business from home and is a trustee of the Down's Syndrome Association, touring Britain and abroad giving talks on the rights of people with the condition.

The article is very moving and very encouraging and it certainly blows away all the stereotypes people seem to hold about Down's Syndrome! I could get it photocopied if anyone wanted to read it.

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Bagpipes · 19/09/2003 10:31

Hi Rhubarb - I am on the other side of the world in New Zealand, but since my DS is down syndrome, I would be very interested to read about this article!!! Maybe you could email it thru to me?? Not, sure if that is possible - but sounds a very uplifting article!!! Cheers

Rhubarb · 19/09/2003 12:04

Tell you what, when I get the chance I'll type the article into Word (I'm a fast typist so it won't take two ticks) and then I can email it onto anyone who wants it. Just contact me via Mumsnet and I'll pass it on.

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aloha · 19/09/2003 12:20

There's a beautifully written feature in this month's Vogue by a woman who has an autistic son. Very touching.

eidsvold · 19/09/2003 19:04

This is a long post but it relates to Anya Souza... very interesting reading.

Report: People with Down's Syndrome Disrupt Screening Conference - Woman
with Down's syndrome tells doctors: 'I am a person not a disease.'

On May 19th, a group of people with Down's Syndrome and their supporters
disrupted the International Down Syndrome Screening Conference at Regents
Collage in London. This is the first time people with Down's Syndrome have
made such a protest and is a major new step in the debate about genetics,
eugenics and the rights of disabled people. As a result of the protest, the
conference organisers allowed Anya Souza to speak from the platform. Ms
Souza, who is a trustee of the Down Syndrome Association, told the doctors
that she opposes Down's Syndrome screening and that people with Down's
Syndrome are people not medical problems. Her speech was warmly applauded
by the conference delegates

The protesters consisted of three people with Down's Syndrome, another
disabled person with learning disabilities and their families and
supporters. They had written to the conference organisers in advance and
asked to speak, but were refused by the main organiser, Professor Howard
Cuckle. It is unacceptable that doctors discuss better ways of preventing
people with Down's Syndrome being born, whilst excluding their voices from
the debate. This runs directly counter to one of the main demands of
disabled people: 'Nothing about us without us'. The protesters expect that
their action will persuade the conference organisers to ensure a full debate
at next years conference with proper representation of disabled people with
learning difficulties. This should be the start of a national debate on
prenatal screening.

In her speech, entitled 'Everything you ever wanted to know about Down's
Syndrome... but never bothered to ask' , Anya Souza said:

"I can't get rid of my Down's Syndrome. But you can't get rid of my
happiness. You can't get rid of the happiness I give others either. It's
doctors like you that want to test pregnant women and stop people like me
being born. You can't abort me now can you? You can't kill me...sorry!

Together with my family and friends I have fought to prevent my separation
from normal society. I have fought for my rights. ..... I have the right
to a job, to services when necessary, to a decent standard of living, to
know about my medical problems, to speak my mind, to make choices about my
friends, whether to have sex, and so on.

To do this you have to be independent when you grow up and not get separated
from society... I may have Down's Syndrome, but I am a person first."

Kitty Gilbert, who also has Down's Syndrome, said: "...... I enjoyed
watching the conference although I was a bit scared of what the conference
people were saying. I think screening pregnant mothers with Down's Syndrome
babies is wrong. They are wanting their offspring to be able to enjoy their
world around them and have endless happiness. I for one gave my mum pride
and joy and I will continue to do so. I think that we should be treated
fairly and equally, not being getting rid off because there is so much more
in life that we can do. We are what we are and ask our opinion."

Rhubarb · 20/09/2003 22:22

Bagpipes, and anyone else who is interested - I have the whole article save on Word so if you email me I can forward it onto you. My email is [email protected].

Eidsvoid, I also searched under Anya Souza's name and came across this thought-provoking article on amnio's here . I don't want to come across all condemning to women who have had these done, or those who have aborted Down's babies, but I think everyone is entitled to the facts no matter how hard they are to swallow!

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eidsvold · 21/09/2003 08:17

I saw that on the other thread Rhubarb - that is where I got the idea that I am now a sinner and a child abuser as I allowed my daughter to be born knowing she had a disability according to Joyce Arthurs. Yes to look at my cheeky monkey you can see that she is abused and has such a horrid mother....

Rhubarb · 22/09/2003 09:43

I got your email Eidsvoid and have sent the Mirror article to you. There will always be people out there who don't think that people with disabilities should be born. Like we are saving them unnecessary suffering by aborting them, not to mention saving the taxpayer who obviously fork out millions themselves just to support people with disablities! But you take a good look at the people who say that, and ask yourself who is the most human here? Who has the happier life? Then don't waste another thought on them, except perhaps to pity them for the lack of love in their lives.

Now go and give your dd a big hug from me!

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bobsmum · 22/09/2003 10:02

Rhubarb - thanks for that essay you posted. I'd never heard the term "eugenic abortion" before - it's quite chilling really, with all the other associations with eugenics.

I don't have an SN child, but would certainly never entertain the thought of any prenatal testing (except a scan purely for the photo ). Didn't with ds and will never with whoever may follow him.

Was particularly horrified by the Professor of Bio"ethics" who advocated kiling of infants after birth (though IMO no less horrific than pre-birth).

eidsvold · 22/09/2003 18:10

thanks for that Rhubarb - oh and nice name

suedonim · 15/11/2003 11:59

Here's a BBC article, parts of it quite shocking in this day and age and part uplifting, about Downs in Russia . Also I wondered what people thoughts were on Gene Therapy for Downs.

fio2 · 17/11/2003 08:27

gosh that is shocking isnt it sue. You wouldnt beleive that attitude still exists at all. Really sad.

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