Opinions are like, ummm, bottom holes

When I imagine the worst possible sub-species of opinionated troll, I simply have to cast my mind's eye back 20 years to my ex Mother in Law. 


She was the personification of everything I am not. A domineering parent. A woman who always felt compelled to unthinkingly voice the strongest of opinions on every subject imaginable, with little forethought, background knowledge or consideration for others. One who played her family like puppets. 

As a young 20 something I listened to the homophobic, racist drivel, cringed inside and distanced myself from her and ultimately the son she had irrevocably damaged. Today, I would have countered her bigotry with something a little more challenging.

And so, it was with this type of minority reader in mind that we set up an interview in the Mail on Sunday for an article designed to question the increasingly accurate and routine use of screening for Down's Syndrome in unborn babies. They were in fact the only newspaper to run a story that didn't simply hail the arrival of the new test as a miracle. (For more background information on this subject read DS Screening: A Few Cautionary Thoughts.) It is a controversial subject, so we were prepared.

But we trust the freelance journalist Alison who we've worked with on Natty's modeling stories. We understood she would present both sides of thinking about the test. I think the main aim was to make parents realise that the test is not compulsory and will only bring anxiety with it. That termination is not the only option, that life with a child with DS is a real and wonderful path to take.

I think the article did achieve this. The headline was questioning, inviting a rethink, Natty's beaming face shining out from the page. The enduring image of the piece.

Of course you can nit pick over semantics, and we parents  might have written the article differently, but it was the Trojan horse inside which we got our concerns into the heads of the more unquestioning Readers.

And if just one of them steps back and has a rethink, then we have reached our goal. I believe in choice and want support for all women whatever their decisions, but we need to stop and think about what and why we are testing.

Many comments that accompanied the online article, which you can read here were unpleasant, friends have told me. We didn't look. We didn't read. The trolls were out in force. But  then we knew they would be. 

So to the ex MIL I thank you for teaching me how to ignore the opinions of those who don't warrant my attention. A valuable lesson in life indeed.

And a final thought. In all matters such as this, we must remember the wise words of Daddy Downs Side Up:

"Everyone is entitled to his or her opinion. 
However opinions are like, well, ummm, bottom holes. 
(My clean version for the blog)
Everyone has one, but some of them really stink."



For more thoughts on dealing with hurtful comments, read Outshining the Bigots.

You might also like to read the evidence I gave in the Parliamentary Inquiry into Disability Abortion Law.

Interview with Actor Sarah Gordy



Snooty Fox Images: Sarah Gordy

I haven't actually had the pleasure of meeting Sarah Gordy in real life yet, but she has had a huge influence on me and is a great inspiration not only to our family, but to thousands of others.

Sarah is a beautiful, talented, humorous actor, (you may have seen her in Upstairs Downstairs or Holby City), a charity ambassador, a public speaker and a campaigner.

Sarah also has Down's Syndrome, but is is not all she is and she does not let it define her.

Sarah recently agreed to let Family Downs Side Up interview her. Mia (M), Natty(N) and I(H) wrote some questions for her:


Sarah, when did you first discover a talent for drama? (H)

At school my teachers said I made the other children feel confident on stage so I always got big parts.  Kaleidoscope Theatre were traveling around the country auditioning people, a friend was going and I went along for the ride.  I joined the Company.  Later Granada TV were searching for somebody to do three weeks filming for Peak Practice.  Carousel Theatre said they didn’t have anybody who could do it but they knew somebody who could.  That was my first professional job.


Snooty Fox Images: Sarah Gordy
Where did you do your training? (M)

My mum’s kitchen table really!  Mum, Catherine (my sister) and me. Mum would ask ‘what ifs’ and we would have to imagine. When we had a story we had to think how the people felt that sometimes made us change the story. We learned nursery stories to train the Little Grey Cells. I also did a course in drama at Sussex Downs College but I learned the most at home.


What’s it really like when you see yourself on TV? (M)

It is not really me, it is the character and it is nice to feel the character again.  If it is an interview then I am watching myself, weird but interesting.  I was so disappointed because I didn’t get copies of Live with Gabby or This Morning.  I would like to have seen them. I have seen other interviews though.





Can you tell us anything about your current project? Or is it top secret ? (H)

‘The Colour of Light' is being filmed in August.  The main role is played by Shobna Gulati (“Anita” in Dinner Ladies, Dev’s wife “Sunita” in Coronation Street) I play “Gracie” I went to Wales last week to shoot a teaser scene and some still photos.  Funding is there for the film but we need some more we want to make it brilliant.  Will tell you about crowd funding later.  “Gracie” is a beautiful role, she makes people feel good.


What is a typical day in the life of Sarah Gordy? (H)

Great question, you know what happens if you are filming or doing a play so I will tell you another day.  I will exercise to one of three tapes.  I will look at Twitter if I have time.  I am Director/Trustee of The Oyster Project which is run by disabled people for disabled people of all types. I help run Oyster Drama Group and we do films and plays. Lately we are also doing dance with James Dunbar of Chicken Shed Theatre.  This takes a lot of my time. Sometimes I help out at British Heart Foundation shop when I have time.  I have to do my share of the housework too.


I know you and your sister are very close too. How would she describe you in 3 words? (M)

Energetic  Passionate  Happy


What’s your favourite cake? (N)

A BIG one. Chocolate.  I love most cakes!


Have you got a pet? I have a Chihuahua. (N)

No.  When we were little we wanted one but mum has asthma.  Dad said we had to choose. Keep mum or get a dog.  He joked that mum could cook and a dog cant.


You are an enormous inspiration and a role model for young people with Down’s Syndrome and their families across the country. How does that make you feel? (H)

Great.  I want people to be happy and not limit themselves.  I feel wonderful if I make people feel encouraged.

I talked to a Junior school assembly on Thursday (made the kids laugh and adults cry) about how we dream about what we will do when we grow up.  I said your dreams more likely to come true if you are fit and healthy and I told them about skipping songs their great great grandparents would have had.  I had toured a play called “Walking On Water” with Theatre Centre to schools which had a lot of skipping.  I get asked to do a lot of talks but I need to earn a living.  Wish somebody would make a film it would tick so many boxes.


What issues would you like discussed/raised by families and support groups working with individuals with Down’s Syndrome? (H)

Mum and I have been talking about habits.  
People with Downs Syndrome stick to their habits. My friend is a good worker at Waitrose. He will always do things the way he was taught you can trust him. Another friend got really upset when she came with us to the cinema.  We take a yogurt or a sandwich a bottle of water or juice.  Her cinema habit is loads of chocolate & popcorn and cokecola.  She thought my mum was cruel.  I love her but she has diabetis and can hardly walk.  Habit learned is for life.


What is Your Dream Sarah? (Sarah's bonus question)

To get a role on TV as a real woman not a ‘Downs Syndrome’.  In the old days a black man was just black he could hold a tray, dance etc.  I have played complicated characters on stage and the critics liked it, but TV is conservative.


You can watch one of Sarah's inspiring talks for TedX here.

        


Thank you Sarah. I look forward to meeting you one day soon.
H x

How Britmums Live and the BiBs changed my life




Friday sees the start of a 2 day event that has me nervous and excited and as keen as mustard: yep, that's right It's Britmums Live!

A time to learn, network, make new friends and, if last year was anything to go by, cry. A lot.

I've done a little video of what the 'blogging oscars' meant to me last year, and how it changed my life in small but important ways.

Please come and say hi and forgive me for being useless with names!


You might also like to read Britmums Live: Come and Say Hi
and about what Downs Side Up has been up to this year,
from Westminster to No.10 in Shortlisted in 

The Rollercoaster of Life: A MAD Bloggers Day Out


A MADs Day Out to Legoland Windsor


The MAD Blog Award finalists and their families


There were MAD bloggers galore
new faces and some seen before.
it was a chance to meet before the big night
and thank our families for their support.


Hayley, Natty and Mia from Downs Side Up


That surreal gulf between knowing an avatar
and spotting someone in reality.
I missed many, for which I kick myself.
I promise to learn names, blogs and Twitter handles.
I will!







New friendships were forged.
puppy love blossomed.
children were nervously chased
as conversations remained half finished.


Natty's day out; eating doughnuts


Too much sugar was consumed
adrenaline made us squeal.
boundaries were pushed
new experiences devoured.

We jumped queues with our gold status
collected badges along the way
our lanyards the souvenir
of a fabulous day..

Reluctance to end each ride
drops of rain, plastic ponchos
tears at the 4D film
we negotiated our lows

Allowing safe risk, letting go
takes practice for me.
feelin sick with each twist and turn
we watched Natty and sis devour the day with gusto.


Up, up and away
"By myself!"

























Soon climbing wasn't enough
Natty wanted the exciting stuff!
My phobia of rollerscoasters
had to be concealed.
(As you can see I hid it perfectly!)


Fun at Legoland

So we ended on a high!
The kids got me on a roller coaster
all the while protesting that I have been pushed screaming bravely jumped out of an aeroplane for charity once and that I have nothing to prove!

Home we came,
Natty snored all the way
and woke this morning chattering
"Mummy scream, Mia scream, Natty scream, Daddy scream."


Thank you MAD Blog Awards and Legland Windsor for your hospitality.
xxxx

Sports Day Sunshine

Last Friday saw Natty's first ever Sports Day! Woohoo! 

Egg and Sppon gentleness

Last year we had planned and practiced, mainly what was expected of her, what each activity entailed and how to wait her turn, cheer on her friends and so on. 

Well, if you can cast your mind back to last summer, it rained. It rained a lot. It washed out 3 scheduled Sports Days and then we ran out of term time. The weather matched my mood, I was so very very disappointed that Natty and her classmates didn't get their first experience of this tradition.

Pippin is smuggled in
However, straight after half term (nice and early in case the weather decided to change its mind) we received a slip giving us the date of this year's event. Straight in with no time to plan or dilly dally.

Sun cream and hats were the order of the day and we turned up proud and excited to watch Mia and Natty enjoy the fun together. They had been put in the same team which pleased them both greatly. In fact it was the first time Mia hasn't complained about not looking forward to Sports Day in her 5 year long school career.

We even brought Pippin with us (Dogs, we later discovered, weren't allowed, so I hid him under my arm and pretended he was a fluffy handbag with legs.)

Now for those who think Sports Day is about being competitive and sporty and excelling and winning, well there is that element, it is brought out in some more than in others. But there is so very much more to it. This Sports Day was very inclusive; every child competed in every event, including the ice lolly pit stop. Older children worked with younger children to encourage and support them. There were future athletes, children who shun excercise and wouldn't put team sports at the top of their list and children with LDs and physical disabilities. 


The sense of achievement for all involved was all too plain to see. Look at Natty's face when she threw her last and 5th hoola hoop and it when over the pole. Priceless. A boost to any child's confidence.

Hoola hoop over pole result!

I was nervous about the 100m race. What would she think as her long-legged friends tore down the straight ahead of her? Would others look on and feel sorry for her 'bless her'. 
Not a bit of it. As Natty tore down the straight as fast as she could, watching her friends disappear over the finish line ahead of her, she looked from side to side at the crowd, with a grin as wide as the Cheshire Cat, and she waved. The crowd roared with cheers as she finished and many other Mums had tears, making my wracking sobs slightly less conspicuous. Pride doesn't come close to describing what we felt. Sports Day being one of the events we wondered if we would ever watch when Natty was born.

Hurtling down the track, waving to her public, after all her friends had crossed the line
Another little girl's wheelchair had to pull over for a pitstop as it was experiencing 'technical problems' because her TA was pushing it so enthusiastically down the straight, so high was the feeling that afternoon. I'm not sure it was made for such speeds ;)

Javelin Thrower par excellence

The egg and spoon race was a similar story. Natty carefully and gently tiptoed down the track, only dropping her egg once. Slowly but surely went that tortoise.

So, new skills were learned, confidences were boosted and our little community was again brought together, brought closer by the variety of children we have in our midst sharing a common goal that afternoon. For, as Mia says, 'Everyone is different'.

I reflected on our Sports Days, when I was always the last to be picked, made to feel chubby and useless, with sadness. Thank goodness those days have gone for our girls, although some schools have yet to fully embrace a properly inclusive Sports Day so I understand.

It's amazing how events like this rake up the past isn't it.
Tricky bean bag event

We returned home happy and with sunshine in our hearts, a few millimetres taller, our chests puffed out far. Mia was beaming. Natty was unusually quiet. When we looked around she had fallen asleep in the car...



DS Screening: A Few Cautionary Thoughts




eu·gen·ics

 [yoo-jen-iks] 
noun used with a singular verb  )

Eugenics is the applied science of the bio-social movement which advocates practices to improve the genetic composition of a population.

Many countries enacted various eugenics policies and programs, including: genetic screening, birth control, promoting differential birth rates, marriage restrictions, segregation (both racial segregation and segregation of the mentally ill from the rest of the population), compulsory sterilizationforced abortions or forced pregnancies and genocide. Most of these policies were later regarded as coercive and/or restrictive, and now few jurisdictions implement policies that are explicitly labeled as eugenic or unequivocally eugenic in substance.




Can you imagine someone telling you that one of your children has less value put on her life as the other? Not just less value, but in fact no value at all, in fact her existence is seen as something to be avoided at all costs?

Can you imagine being asked to put a value on your unborn baby's life based on the fact she will be a little different and asked to decide if hers is 'a life worth living'?


Can you imagine someone telling you that it was a 'mistake' that your beautiful, happy child was born in the first place? Asked in assumptive way why you didn't have any testing?


Can you imagine hearing that the world is trying to quite literally 'eradicate' children like yours forever?


Parents and families of children with Down's Syndrome don't have to imagine. This is what the media and certain sections of government and the medical profession are telling us all too loud and clear, albeit indirectly.


Press Release Last week, the '98.6% accurate' blood screening test, developed by controversial Professor Nicholaides of Kings College (similar to the jauntily named MaterniT21 Plus privately available in the US - it actually makes me feel queasy that they have mixed the word 'maternity', with T21 to produce a fluffy name for a test that will ultimately lead to the termination of hundreds of babies with Trisomy 21), was announced to what can only be described as jubilation from the nation's media, who reported that we might soon be able to 'completely eradicate Down's Syndrome' along with Edwards Syndrome and Patau Syndrome. I saw not one story giving a balanced view, or one that contained all the facts. Prof N had carefully orchestrated these stories with a press release that omitted the facts that he was far from ready to launch his test, that it still needed invasive techniques to confirm a diagnosis. Thankfully.

Video clips of joyous and relieved parents who were considered 'at high risk' of having a baby with Down's Syndrome were shown receiving the 'good news' of a 'negative test result'.
Since that time share prices in the company that developed the US blood test, Sequenom, have risen by 11%.




The Test Myth
Firstly, let's get one thing straight. This test isn't designed to prevent babies with Down's Syndrome from being conceived or to 'cure' them. It is not an 'illness' that you can prevent.  That is not possible, even if anyone would want to do such a thing.
This test is simply designed to detect them. The 'eradication' part comes in the form of termination/ abortion. It's as simple as that.

I don't have an issue with the test itself, it is the way it is implemented and its part in a wider organised 'Decision Planning Strategy for Down's Screening' by the government (I quote Dr Poulter of the FASP). Screening does what it says on the tin. Our children are being slowly screened out, like substandard fruit on a conveyor belt. Some would call it a Seek and Destroy Mission.

Such tests are offered to parents 'for their peace of mind'. But any test only gives you peace of mind if you hear what you think you want to hear. In 2004 a Health Technology Assessment stated that all antenatal screening raises anxiety levels, regardless of the results. Very little information is given before, during or after. A quick glance at onlie parenting forums will confirm the stress levels of Mums as they wait for their results.

What the test has in its favour is that it is less invasive and safer for mother and baby than CVS or amnio. Historically anywhere from 1 in 50 to 1 in 100 invasive tests would result in a spontaneous miscarriage. (Notice that I don't state whether these miscarriages were of healthy babies or not, because I don't think it matters. The value of life is equal.) 

That would be fine you might say, parents can have time to adjust, read and learn about the condition, contact support networks, meet other families, prepare themselves for the arrival of their gorgeous new baby. Those that decided they simply couldn't cope after much soul searching and having been given time to learn about the realities of Down's Syndrome would have time for an early termination.



Choice?
However the figures suggest otherwise. 92% of all pregnancies where there is a diagnosis of DS are terminated. Does that sound like people are being given a true choice? I would argue that choice is actually being removed, the choice to continue with a pregnancy is being removed. Often it is never mentioned, termination is almost universally automatically assumed.

Now I am believer in a woman's right to choose a termination after being given unbiased facts so that she can make an informed choice with full support but this is not happening. I attended the Parliamentary Inquiry into the Disability Abortion Law (read my evidence here) and an unsettling pattern emerged. This is not a religious matter, but an ethical and moral one and it doesn't matter what your opinions on abortion are. The following paragraphs contain quotes from that meeting in Westminster.





Anecdotal Evidence
'At point of diagnosis two leaflets are routinely given, one on CVS (this will dissappear after MaterniT21 is fully rolled out) and the other on the termination process.' 
Where is the 3rd leaflet about life with a child with Down's Syndrome? Does anyone get offered the change to meet a family? One woman was told not to contact the Down's Syndrome Association as 'they are pro-lif'e. A total nonsense, the DSA aim to support everyone, whatever their decision and at whatever stage of the Down's Syndrome journey they are on.

Parents report feeling supported until they made a decision to continue with the pregnacy, and then support was withdrawn, leaving them feeling like 'naughty school children who had done the wrong thing'. One mother was told by her consultant that he could no longer treat her if she chose to continue with a pregnancy if 'it had a foetal abnormality'. So, women who continue their pregnancies are being discriminated against and treated differently. They are not being offered the same level of care.

Terminations are being offered for the day after a diagnosis. 'I can book you in for the morning'. no cooling off period.
You get more thinking time to mull over a double glazing purchase than that!

‘I do know women aren’t being given balanced information at the point of diagnosis in order to make informed choices, and are left with little or no support or counselling during testing, after diagnosis, before termination, after termination, if that’s what they choose…Worse still, even after a decision to continue with a pregnancy, couples are being asked if they 'are sure' at each scan or medical appointment, and are being reminded that a late termination can be arranged. I know families that have had to insist that notes are written across the top, a large banner, ‘please do not ask me any more about this’. 

‘The assumption is, if you get that diagnosis, you’re going to terminate your pregnancy, and that’s where everything is being pushed, in terms of information, in terms of support. You get plenty of support around a termination. There isn’t other support.’ 





To be clear, an abortion 'up to and including during birth' can currently legally be arranged in the UK if the baby is at risk of being 'seriously handicapped', and old law from '67 that is being overhauled at the moment. It would seem some doctors are offering this option to parents of babies with DS. Even if this is only happenig pushed, in terms of information, in terms of support. You get plenty of support around a termination. There isn’t other support.’


Worse still, figures for terminations for the reason of DS are being fudged for whatever reason (as are those for cleft lip and palate and club foot). The cytogenic centre who note the amnio results recorded twice as many in a year as the Dept of Health. Interesting. 

Terminations for Cleft lip and palate are hardly ever recorded, but a facial surgeon stated that he was almost out of a job because he just wasn't seeing these babies being born any more. Shocking.


The Down's Syndrome Lie 
Now I for one don't know what we would have done, in a place of fear and ignorance, if the doctors we trusted implicitly had advised us to terminate had we known our baby had DS, if they had told us 'our lives would be ruined' that 'it would be unfair on our other child'. This is the one and only syndrome, disability or chromosomal condition on every parent's lips. Why is that? I fear Down's Syndrome is just the very visible tip of a much larger iceberg, with adults with non specific learning disabilities now being swabbed to look for genetic patterns to enable earlier diagnosis. We can all see where that ship is heading.





You see there is a veil of fear and mystery surrounding Down's Syndrome, one that I try very hard to remove through my blog and Natty's modelling and so on. I too was afraid of the unknown when Natty came into our lives, having been brought up in 70s Britain where those with learning disabilities were segregated. I thought it was a veil of ignorance on the part of many medical professionals too, assuming their patients would want terminations through their own lack of knowledge and outdated perceptions of Down's Syndrome, putting the diagnosis on a par with terminal cancer, but the Inquiry unearthed something more sinister. It very much seems like lies about Down's Syndrome are very convenient.

It seems that keeping prospective parents in a place of fear and worry, leading them to believe that a child with DS will be doomed to a life of 'suffering' and 'misery', being 'afflicted by' the condition, reliant on constant support, defined by their limitations, mocked by others, makes it easier to present termination to them in terms of 'euthenasia', for the 'benefit of the child and to ease the burden on them'. 


 Language commonly used is anything but unbiased and neutral in one.


RISK        BAD NEWS        SUFFER        NEGATIVE TEST RESULT        I'M SORRY FOETAL ABNORMALITY        CHROMOSOMAL ANOMALY       SCREENING       
IT       ABNORMALITIES






Our Story
I am thankful that we didn't know that our baby had Down's Syndrome. I am thankful that our wise midwife, who had seen it all, steered us away from invasive testing, advising us that we should make a list of all the reasons why we thought we couldn't cope with a child with DS. I guess my list was short before I dismissed it out of hand, but I recall putting that I wasn't sure my marriage would survive on it and that we wouldn't be able to travel again. How very wrong I was on both counts, and how silly that sounds in hindsight.

Don't get me wrong, there are challenges, and days of dark worry as a parent of a child with DS. Extra help and support takes time and patience but it soon becomes part of your routine.  Looking ahead to ensure her independence as an adult is not something most parents of a 6 year old contemplate.
People do look, but never out of malice. I never see staring, only people who want to get to know us and our delightful girls better. Yes there are somtimes insensitive questions, but never intentional is ill meant.


History and Future of Eugenics

The facts, figures and consistent anecdotal evidence are all pointing in one direction, and that is a co-ordinated attempt to prevent those with Down's Syndrome from entering our society. And that, is Eugenics, which is of course what Nazi Germany was infamous for, although as an ideology it was first created by British Francis Galton.  Hitler's Eugenic programmes started with the extermination of children with disabilities, although this is not often raised in discussions about the Holocaust, almost as if these individuals didn't count as much as the Roma, the homosexuals or the Jewish communities that also suffered under his regime. Apparently the media and public are far less enthusiastic about MaterniT21 type tests in Germany. History has taught them a lesson or two.

Britain's link with eugenics has been an embarrassment that has been oft hidden in the closet, but yes it was there and it very much seems as if it still his here, albeit dressed up in a nice palatable, sanitary way that is designed to give each family their standard issue two children. If one is defective, they can be removed and replaced with a 'typically developing one' and feel rest assured that this replacement child will have a better life than the other would have had. Where did this become the norm along the way? Why didn't we realise we were being led down this path?


In summary £30 million is spent on screening for DS and terminations each year in Britain
Yet a mere £500K is spent on DS research (much of that, the DSRF UK informs me, is on developing screening tests themselves). That's a lot of money on what was hitherto a very risky procedure. My question is why? And why this particular Syndrome? I can only think it must only be for perceived monetary reasons.

A study carried out in Queens Hospital Staffordshire in 2004 concluded that screening for Down's Syndrome was unethical. We have laws protecting disability equality after all. We are supposed to be a civilised society.



The Impact 
I often wondered why we see so few other children like Natty. How on earth will we explain that to her as she gets older? To her sister and cousins, her nephew, when they learn that her extra chromosome, that makes her so uniquely 'Natty' is the reason others choose not to bring a much wanted baby into this world?

Of course fewer children with DS also impacts on support networks and role models for our children; the fewer babies that are born, the more isolated the rest of the community will feel.

And adults with DS can read. They do read the newspapers and watch the TV headlines hailing this miracle 'advance' in medicine.

We must however bear in mind that some parents opt out of testing altogether, as my brother and his wife did. They were met with confusion from their consultant, a 'tumbleweed moment' as they described it when they told him. Others report having to make up religious reasons for not wanting it in order to satisfy the questions of their midwife. Now with MaterniT21 about to become readily available at around 10 weeks gestation, fewer than ever will actively opt out.

What will parents too afraid to embrace DS miss out on? What extra dimension will their communities lack? What lessons will they never learn about themselves and what alternative view of the world will they never be party to? Life without Down's Syndrome would be unimaginably uniform, dare I say it rather dull.


My husband and I attended our (mainstrem) school sports day last week. We watched proudly as both girls laughed with friends and took part in every event alongside their peers. As Natty ran down the 100m straight, far behind her long-legged peers, she beamed from ear to ear and waved at the crown as she went. They clapped and cheered as she passed, many with tears of pride in their eyes. I don't think one person in our community could imagine life without Natty, her comedy timing, her hugs when others' tears flow, her selfless take on life ( 'I want a heart and a star for my birthday'), the way she lives utterly in the moment. The way she sings her requests for snacks, the fantstic costumes she dresses in sometimes at midnight, her loyalty to her friends, her boundless enthusiasm for school and her teachers, her ability to stop any baby crying at 50 paces, her intuition and sensitivity, the way she tells complete strangers not be sad (so often they tell me they have been ill, or have lost their job or have had a row with a spouse and that she has lightened their day), the way she knows exactly how to irritate her sister, or sniff out a cake, or have a room captivated, all eyes on her. The way she makes me late for everything because we have to stop and chat, or smell a flower, or sing Mama Mia again.



The True Value of Life And that is the true value of life. Not monetary cost, nor how much support you need or how dependent you may or may not be one day, nor how long you will live, nor whether you will have children or not. Aparently the powers that be measure our worth in QALYs , that's Quality Life Years. Funnily no-one that decides what these are actually walks in the shoes of any of the people it presides over. 

Both of our girls have taught me to be a better person, and of worry, pride and true unconditional love.
Natty has taught me the value of inclusion, of difference, of patience. And not to simply accept what we are taught to believe. To scratch beneath the surface and shout about what I find there. She has taught me that you cannot plan for everything in life, that to be a great parent you need to bend like a reed. She has given me the confidence to go out and talk to medical professionals, Parliamentary Members, teachers and parents. She inspires new parents, and is a role model for children with disabilities everywhere.

So when Prof N's test was unveiled to universal acclaim in the media I sat in the kitchen and sobbed. Knowing all these facts and figures, the new simple test made the 'eradication of Down's' seem even more inevitable. I told my husband that it was all over, that we had lost, that in 50 years we will have lost these precious individuals for ever, that other families were being denied what our family has gained. The past years of progress that we have all made together for inclusion and acceptance seemed futile, washed away in a single news story. I felt like a young salmon trying to swim up Niagara Falls.

Daddy Downs Side Up told me to pick myself up and carry on spreading the word. Tp join forces with others in the fast flowing waters.

I think as a community we now need to invite the medical profession more than ever to work with us, to become involved in training, education and developing unbiased support and information for prospective parents. We need to reach out. Many wonderful midwives and doctors are already involving and engaging disability groups and parents in their sessions, such as the DSAs Tell it Right training campaign, that I understand they have offered free to Prof N and his team. Let's aim to spread this further.

Sadly in the meantime I am aware of at least 2 midwives who have taken early retirement because they find the emphasis on screening and perfection too artificial and disheartening.

I also look forward to the full report from the Disability Abortion Law Inquiry and seeing if any changes will be made to the current laws and the level of unbiased support given to all parents, whatever path they choose.




‘To Natty, I love you so much and you’re the best sister in the world and so precious to me. You’re so important to me and if you weren’t in this world my life wouldn’t be the same and that would be terrible. I love you so very, very much and you mean everything to me. Your sister, Mia.’