Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism

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Mum’s the Word

Recently, my almost 12 year old asked me a question. Actually she asks me loads of questions. Most of her conversation starters begin with “ I’ve got a question”. This has been the case for a very long time. I’ve been told this can be a feature of her Autism; a kind of verbal tic even, but I’m not sure that’s helpful. I see no reason to medicalise or even analyse her every characteristic. And, whatever it is, I quite like it. It gives me a moment to prepare for whatever might come next. It’s rather charming too.

Her question was this:

Was it ok for her to still call me ‘Mummy”?

She is my firstborn. She has always called me Mummy. This is my name as far as she is concerned.

And she was concerned. She had presumably heard others at school refer to theirs as ‘Mum’. She was worried that she might be expected to make a change, to fit in with others, to appease them. To not stand out or appear babyish. And here is where her autism really does kick in. Changing my name…changing that familiar, constant, never previously questioned name was a step too far for her. Venturing into the Land of Unprecedented. A change that society seemed to want to force on her. I am her Mummy. She said.

And who am I to argue?

I am her Mummy. For many years, I thought I might never be anyone’s Mummy.

We live in an age where, increasingly, we are encouraged to identify as whoever we want to. This isn’t a blog post questioning or criticising that….far from it. If I could have identified as a Mummy when I was in my 30’s and held a baby in my arms, I would have done so – in a heartbeat.  It was not in my control to do so. There was no child for a very long time to bestow that identity on me.

Eventually, after many years, M brought me that identity. I call it a privilege because it feels like one. Even now. Still. I will never get tired of hearing her call me Mummy. Or Mum, if she chooses to.

Recently, I’ve noticed a frustration creeping into the SEN/disability parenting world from parents who wish they weren’t continually referred to as ‘Mum’ by professionals in appointments or meetings. They want to be afforded the respect of being addressed by their actual name. I fully understand their reasons why, but I just don’t feel the same way for reasons I’ll try to explain. The word Mum or Mummy can often feel like a label. Slapped on carelessly at times. It can feel belittling to be in a room of professionals with all kinds of titles as well as letters after their names and be referred to as ‘Mum.‘ It’s sometimes as though before you’ve even entered the room or said a word, your opinion will not carry as much weight as theirs. You are just ‘Mum’ after all. I get it. I really do. I’ve felt that sense of inadequacy being bestowed upon me by those who believe they must know better. Thankfully only on rare occasions, but I have. But I’ve also had to recognise that, they do often know better than me on all kinds of levels. And, quite simply, being a ‘Mum’ to me is not belittling. It’s a title I love and cherish. A title that brings to the table as much as those with professional titles do. Often more so. The problem, I think, is not with the name or title – it’s with the understanding of who that name or title is.

Ultimately, this is just not a battle I am choosing to fight. I have no issue with others doing so, however. And so, although it has occasionally happened to me, and I’ve been labelled ‘Mum’ in a way that may not recognise what I bring, I’ve learnt to peel it off and reapply it as a badge of honour. A privilege. Undeserved. Something that I did not earn or study for; it was a gift out of the blue. But still mine to wear nonetheless, and a weighty one too.

I don’t think I will ever mind being called Mum. Or M’s Mummy, or Hazel’s Mummy. After years of heartache at not being one, why would I? I have many friends and acquaintances who would also give anything to have that name. Their own heartaches of baby-loss, losing a child or of infertility means that the name ‘Mum’ carries real pain and/or remains unattainable.

And, of my own two children, even after nine years, one of them has never called me Mummy. Not clearly, not properly. She is also Autistic but Non-Verbal. She sometimes forms a sound ‘Mmmmm’ when she sees me, or when she is poorly and needs me. That’s the closest she comes to using my name and it makes my heart sing when she does. So when others, even professionals, refer to me as Hazel’s Mummy, I have to admit to feeling nothing but pride. I can’t help it. It’s something I cannot ever take for granted. And I want her to hear my name used as often as possible. Who knows, perhaps one day she will say it back to me if she hears it spoken often enough.

If the role of being someone’s Mum came with the honour, respect and dignity it truly deserves in society (and not just on Mother’s Day) then perhaps other ‘Mums’ wouldn’t feel so belittled or put down.  Perhaps others who find out they are going to be a Mum will feel supported and respected enough to continue their pregnancies instead of feeling that they have no other choice but to end them. Perhaps those ‘Mums’ who are told their unborn baby has Down syndrome will be honoured and respected by being offered all the help in the world to birth and care for their child. Instead they are often routinely steered in the opposite direction and told it’s for the best. Their role as a capable Mum called into question in those first few weeks and months of pregnancy and never even given a chance. Perhaps those who have suffered the pain of loss through miscarriage or losing a child in later years would be afforded the dignity and honour of being recognised as their Loved One’s Mum – always. And perhaps those who long to be a Mum but, for whatever reason have not been handed that title, would have their pain recognised and given all they need or want to help carry it.

Titled not labelled. Dignified not denigrated.

Mum. Mummy. Mom. Mama. Mam. Me.

Mum’s the word to be shouted from the rooftops, never silenced, never shamed.

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Poetry in Motion

Butterfly poem

I’ve discovered a love for poetry in recent years. A passion awakened by hearing the late, extraordinary Mary Oliver read her poem ‘Wild Geese’. An experience that had a profound effect on me at the time. Now, her words, hand painted, hang from my living room wall. Words that made me gasp and caused my heart to sing. Words that still do. The power of the spoken word, especially spoken by the one who crafted it,  is immense.

I’ve always imagined sharing these treasures with my children. And I’ve started to, with my eldest. I shared another poem, by the same author ‘I worried’, with her recently. Her anxious face lit up as I read. Someone else knew how she felt. It gave her confidence. It affirmed her. She was not alone. She loves words too and is beginning to discover the sheer joy of poetry. Of words used well.

My youngest child, who has Down’s syndrome, is largely non verbal. She has very few, if any words. She may not yet have the words to say to us but our words matter hugely to her. And poetry is, it seems, a powerful form of expression for her too. The spoken word. Only the other day, I found her looking at the Ipad over her sister’s shoulder, as they watched Michael Rosen perform a poem he had written. She could not repeat a single word but was utterly captivated by his expression, his story telling and his passion for the subject – Chocolate Cake. He brought words to life and enabled her to share in his delight. Unlocking a subject she knew little about in a glorious way. There’s nothing quite like the joy of hearing a non verbal child laughing like a drain!

Words, or more importantly, how we use them have the power to unlock or close down.  As we approach another World Down Syndrome Day I see many people online spreading a message through their words and pictures of what life is really like to live with Down’s syndrome. Telling a story of hope, fulfillment and community. They do so for good reason.

All too often, the words offered to pregnant women and their partners when the subject of screening for Down’s syndrome comes up, are words that close down. Words that shut out possibilities. Words that paint a bleak picture. Words that may offer sympathy but that do not offer hope. There is no power in pity.

It’s time this changed. We know the reality. You see we have a passion for the subject. And we can tell these parents a different story. We can use words that can unlock their dreams and their hopes and their plans again. We have the words that can dispel the myths, whilst being able to acknowledge their fears; we were in their shoes once too. We have the words to give them confidence. The words to affirm them as parents who will be able to love and cherish their child regardless of an extra chromosome. We have the words to show them that their child is not going to be defined by a list of medical issues or learning disabilities. We can bring words to life. Real life. Their lives.

We want these parents to be given the opportunity to talk with or learn from families who are living lives that include Down’s syndrome. Living lives not of medical reference but of poetry that reflect the highs and the lows of bringing up a child with Down’s syndrome. We want to be able to unlock a subject they may know little about and invite them to discover for themselves the joy that is to be found in the life of a person with Down’s syndrome.

Poetry in motion. Lives well lived. 

Sadly, here in the U.K. there are no second chances for the 90 percent of babies who are detected as having Down’s syndrome in the womb. Their prospect of life is brought to an end. Discriminated against before they even draw breath.

We need to get this right. Words need to change and the voices of those who know must be heard – especially at that most critical time of screening and diagnosis in pregnancy.

Mary Oliver is famous for many words, but perhaps, most poignantly, she asked the question,

“What is it you plan to do with your one wild and precious life?”

It’s not the only question that deserves a careful answer.

 

For more information on Down’s syndrome from people who really know please check out these great resources:

Positive About Down Syndrome

Down’s Syndrome Research Foundation

Wouldn’t Change a Thing

Down’s Syndrome Association

Lose the Label

 


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Wait for me

Wait for me…

I’ve never been very good at waiting. As a child, if you gave me a Christmas or birthday present before the big day, I’d be itching to know what was inside. Prodding and poking it until I’d eventually worked out exactly what was concealed. I couldn’t wait.

It was the same when pregnant with both my children. Boy or girl, I wanted to know. I didn’t need to know, I just wanted to. For no other reason than my curiosity got the better of me. I admire couples who choose not to know the gender of their unborn baby. They have a level of self-control that evades me totally.

But having had two children, both with additional needs, I have had to learn, really learn what it is to wait.

“Wait for me” is a phrase often heard in our family. My eldest child M, recently formally diagnosed with another condition – Dyspraxia (DCD), uses this phrase the most. With good reason.

You see, for her, a simple walk with family or friends means twice the effort.

What most of us able bodied do with relative ease is more challenging for her. It’s easy to overlook the work she has to put in to keep up the pace.

So she reminds us.

Wait for me.

Her friends and peers are supportive, but sometimes they, quite understandably and naturally forget; running on ahead in their excitement. Leaving her behind.

Wait for me.

Just the other weekend, we found ourselves staying in the beautiful Welsh/English border countryside with friends.

Outdoors obviously called for some exploration.  Not the easiest of terrain for anyone with mobility issues! So, to see her very close (and particularly agile) friend hold back and help her negotiate a steep grassy slope, hand in hand, made my heart sing.

The friend waited.

She didn’t have to of course. No one would have blamed her for running on ahead, doing exactly what children do.

The friend valued my daughter and was prepared to put her own agenda to one side.

Valuing each other is something increasingly missing in our society. Really valuing each other I mean.

Putting the other person ahead of ourselves. Seeing their worth and valuing them for who they are, however different they may appear. Going at their pace, looking for ways to help them move forward; however much that may slow us down. Not leaving them isolated or abandoned.

The friend made a choice to value. That choice made all the difference; to my daughter, and to me.

Nearly seven years ago, when doctors told me my unborn baby might have Down’s syndrome or another  condition, I chose to wait. I chose not to have invasive tests that would tell me for certain if that was the case. It wasn’t easy to wait. I won’t lie – part of the reason for not wanting to know was that I was in denial about even the possibility of having a child with Down’s syndrome. Part of me hoped that it was all a mistake and everything would be “fine” in the end.

Wait for me.

Hazel, my youngest, is now six and a half years old. She loves life and most of all she loves and values people. People like you and me.  People.

I waited for her.

She arrived and our lives were undoubtedly turned upside for a while.

She patiently waited for me to come to terms with her extra chromosome.

I am eternally glad I waited for her.

Waiting for her has taught me more than anything about the priceless value of human lives. … hers, mine, yours, theirs.

I hope that women really do get a choice when it comes to the new prenatal screening tests (NIPT) being introduced across the NHS. I hope that choice actively includes supporting women choosing NOT to screen if they really don’t want to. Supporting them instead to wait. Supporting their choice, instead of pressuring them to ‘choose’ termination. There are far too many real life examples of the latter happening to women.  I know, I was one of them. That’s not choice.  There is another. And it’s a choice well worth making, I am certain of that.

There is real value in choosing to wait.

Wait for me.

#equallyvalued

#dontscreenusout


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Laugh Out Loud

What makes you laugh? I mean really laugh. Out loud. Guffaw. Face-achingly so.

Slapstick humour? A pie to the face? Or a slip up on a banana skin? The sort that only happens in cartoons….except when it happened to my husband a few years ago, and I’m still laughing.

Or perhaps it’s wit. Great British sarcasm or irony. An evening on Twitter can provide an endless source of amusement, especially in the field of politics, if that’s your thing. And as for US President, Donald Trump…his surname alone provides great joy and laughter for the eight year old in my house.

For my younger daughter, Hazel, with her extra chromosome, I really don’t know what makes her laugh. All I know is, she does. Often.

Laugh. Giggle. Snort. Belly laugh.

She somehow missed the memo about suffering (you know – the one given out with the advice to pregnant women about their risk of having a baby with Down’s syndrome.) But what is she laughing at or about? I genuinely don’t know ninety percent of the time. It’s a mystery. Lately, she’s been waking up giggling. Laughing, alone, in her cot bed. At what?

No idea. But it triggers more laughter. It’s contagious. One by one, we go down with the same condition. We just don’t know why.

Often, she’ll start laughing at other random moments of the day. Really laughing. Again, I have no idea why. There are no visual clues. Nothing funny has happened. No slapstick or custard pies to be seen. Nobody has fallen over or stubbed their toe. No one has made any rude noises or said the word poo. No one has told a joke – even if they did I doubt she would understand a word of it, and our jokes aren’t usually that funny!  And, as she has very little speech, it’s not as if she can tell me what’s so funny.

Share the joke Hazel.

There are, of course, many occasions when we can see the reason for the joy.

Her older sister can be guaranteed to extract laughter from her in that special way only siblings do. The bond is tangible and strong. Clearly, her sister missed that memo…you know, the one about how the siblings will suffer.

Then there was the time recently when a dear friend came to visit and joined in with the bathtime routine. Much hilarity and joy as our friend – who just so happens to make people laugh for a living – introduced a song and a dance to the proceedings. Laughter like we’d never heard coming from the tub.  You really know how to extract the laughter from her, say I. It’s kind of what we comics do says she.

Extracting the laughter. That need, sometimes, to go after the joy. To find it, work for it and revel in it. Life is hard, we may forget to laugh and not experience its benefits.

According to one study: Laughter is a powerful antidote to stress, pain, and conflict. Nothing works faster or more dependably to bring your mind and body back into balance than a good laugh. Humour lightens your burdens, inspires hopes, connects you to others, and keeps you grounded, focused, and alert. It also helps you to release anger and be more forgiving.

In Hazel, the laughter has just been there. I haven’t had to try too hard at all, though I sometimes wish I knew what or who was extracting it! I often pray that she will be surrounded by Angels, seen and unseen. Only now, I wonder if God has assigned her to the safe keeping of the heavenly host’s comedy division – after all, someone’s making her giggle when no one else is around!

Hazel laughs. She also cries. She experiences a whole range of emotions. She knows pain and she does know a degree of suffering, I won’t deny that. In a day of laughter and giggling, like today, there has also been pain and discomfort as she went through yet another feeding tube change. She cried. I cried. How I long for the day when she no longer needs a tube in her stomach to keep her alive. This week alone she has three hospital appointments, none of which will be a walk in the park, for her or me.

Still she laughs. And we laugh with her. Far more than we ever did before she became part of our lives. Far more than we ever cry.

The risk of laughter…side splitting, face aching, snort inducing laughter is never far away. It seems Hazel is way ahead of most people without an extra chromosome on so many levels. She does joy rather well. Joy inspite of pain. Joy alongside pain. Joy triumphing over pain.

For any expectant parents who may be reading this and are faced with this risk, let me be clear. The stakes are very high. Joyously so.

It’s a risk definitely worth taking.

#dontscreenusout


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Consider the Tortoise

Pets.

I’m not a fan of them, as those who know me well will testify.

Brief forays into rabbit or guinea pig ownership as a child were enough to convince me that pets were not for me. A fear of dogs from an early age led to a general avoidance of all things four legged, furry or winged.

They’re just saying hello are words that, quite frankly, make me cross. Leave me alone. I won’t annoy you, so please don’t annoy me…. has generally been my motto around other people’s beloved pets, with one or two exceptions.

But I am fascinated by the adoration and reverence afforded to our nations pet animals. Cats, dogs, hamsters, rabbits, guinea pigs, stick insects and the like.

Why? Why do people go to so much expense, time and effort for these creatures? Surely their life would be easier without them? Just think of the vets bills. And what about the commitment? The lack of freedom when you’ve always got to find someone to feed the fish or put the cat out when you are away? Or the expense of a cattery or kennels or as is most fashionable these days a pet/ house sitter. And then there’s the poo. I’ll stop there.

I don’t get it. But I do accept it.

I have no right to criticise people who are pet owners. They know the costs but they think more of the humanity of owning a pet. The benefits. The joys. All that owning that pet will bring to their lives and the life of their pet. They are not selfish people.

They get it, I don’t.

I do, however, get the desire to care for, love, receive and give affection to another. The humanity of caring, nurturing, treasuring and enjoying another being.

Consider the humble tortoise.

Once freely available and cruelly imported to this country before the law was tightened and permits for keeping them were introduced.  For humane reasons.

Tortoises make great pets according to some. They sleep for months on end, don’t need to be taken for a walk and children adore them. Oh and they happen to live for decades. They may even outlive their owners! A fact that clearly hasn’t put off the increasing number of people who now keep tortoises as pets.

According to a recent article in The Telegraph, we as a nation (UK) spent a whopping £6 billion on our pets last year. Heartless animal avoiders like me might argue that this money would better spent elsewhere. On the NHS, for example, or in our schools.

But whilst I may not understand the nation’s pet obsession, I will not criticise it. Nor will I say that this is a cost than can be avoided…“if only pet owners would stop being so selfish and think how better that money could be spent.“

Yet…. these are attitudes that families of people with Down’s syndrome come across frequently, especially in the media. Worse still, expectant parents are faced with an ever increasing pressure for their unborn to be screened for the condition with the rolling out of a new pre natal screening test – known as NIPT. (Non Invasive Prenatal Test).

Why?

It’s so expensive to care for a child with Down’s syndrome.

They are a burden on society.

Well, who’s going to care for them when you’re too old?

They will outlive you. How do you feel about that?

Society is better off without them.

It’s selfish to knowingly bring a child with the condition into the world.

It’s not fair on the siblings.

Your relationship will suffer.

These are, shockingly, all real opinions that have been put to families like mine all too frequently. Not only to us but also to parents who, after hearing them from various sources, decide they can’t go through with a pregnancy that has been declared defective by the detection of an extra chromosome.

My question is this. If, as a nation we can pride ourselves on our passion for pets and place high value on their humane treatment and care – however long they live, why can’t we do that for people like Hazel? For those yet to be born?

Consider the humble tortoise. Mistreated and now, thankfully, protected. Cherished even.

Why, if we consider ourselves a humane society, is protection seemingly too much to ask for those with an extra chromosome? We appear to have forgotten the definition of this powerful six letter word.

humane
hjʊˈmeɪn/
adjective
  1. 1.
    having or showing compassion or benevolence.
    “regulations ensuring the humane treatment of animals”
    synonyms: compassionate, kind, kindly, kind-hearted, considerate, understanding, sympathetic, tolerant, civilized, good, good-natured, gentle;

    lenient, forbearing, forgiving, merciful, mild, tender, clement, benign, humanitarian, benevolent, charitable, generous, magnanimous;
    approachable, accessible;
    rarebenignant
    “regulations ensuring the humane treatment of animals”


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Choosing you

Breaking news….

Babies in the womb are to be routinely offered a new screening test. This new test will allow each baby, or foetus, to screen their parents for a whole range of potential risks.

Very soon all unborn babies will be able to see if their parents carry any risk to their quality of life or future prospects. Screening will be offered for risks such as parents who may be a potential burden to the child in their later years, or parents who may suffer any one of life’s challenges that many people might face such as illness, financial worries, divorce, redundancy or even death.

Babies will be offered balanced and up to date information as to the kind of parents they can expect. Full support and counselling will be offered to the unborn should they choose not to take up their parents. They will, of course, be encouraged to try again for a better set in the future.

So far, only major risks are being screened for but experts say this is just the tip of the iceberg. It is envisaged that the potential for screening out a whole variety of parents is only a matter of years away. Screening experts say that, in the future, foetuses will be able to ask for all manner of things to be screened including the colour of their parents’ hair, or, in the case of males, whether their fathers may go bald prematurely. Some are hopeful that the new screening tests will be further developed to predict the standard of living the babies’ parents will have as well as the types of upbringing they can offer the baby, to include things such as a good school or a university education.

Some experts and parenting groups are urging caution, however. They say there are concerns that babies will even be able to choose their parents based on which football team they support or which supermarket they shop in.

Pro-choice lobbies are hailing the new tests are a major step forward for foetuses the world over. “My body, my choice”, said one campaigner.

However, it’s not all plain sailing. Despite the huge advances in medical science it seems that babies are largely ignoring the new tests. Despite much pressure on foetuses to take the test it seems that take up has been slow. Well, non-existent really. Doctors are baffled as to why babies seem reluctant to find out as much as possible about their potential parents.

It’s a mystery said one.

Or perhaps it’s a revelation.

Revelation noun – “the divine or supernatural disclosure to humans of something relating to human existence.”

 Parent – noun – “one that brings forth offspring”

#dontscreenusout


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Questions, questions…

We’re going to have a baby.

Six little, life changing words. And no…. this isn’t a personal announcement, sorry to disappoint.

It appears that just simply saying them is no longer enough. Social media has fuelled the creativity amongst expectant parents and they are finding more and more wonderful (and not so wonderful) ways of announcing their life changing news.

There are the more obvious ones, often involving feet. Hairy pairs of flip flopped feet lined up alongside pretty, pedicured toes and a cute pair of tiny flip flops.

Flip flop announcement

Then there’s the perfectly placed family of safety pins with a smaller pin inside the second in line.

safety pins

Or the loved up couple on a woodland walk, holding a vintage chalk board sign bearing the words and then there were 3 or something similar.

.dreamstime_s_56410253

I love them all.

There’s also the increasing trend of the Gender Reveal Party.

Guests are invited to place their guesses.

He or she, what will it be?

 Your vote…pink or blue? And leave a name suggestion too.

Then there are those that are, perhaps, a little questionable. A somewhat dubious cake posing the question…Will it be a cup cake or a stud muffin?

Sand couple                                             We're here cake

Or even the “We’re Here For The Sex” cake. Yes, really.

My particular favourite has to be the pink or blue champagne. Though, after a glass or two at that party, you risk forgetting what has actually been announced. Blue or pink.pink blue champagne

I love them all.

I love the hope – the joy and the excitement they generate. I love the fact that they celebrate a new life. A baby. Their baby. I love that they acknowledge it as a person. A precious baby, a precious new life. I share their joy.

Welcomed. Wanted.

What will it be?

But not every expectant parent wants to celebrate. Or even make an announcement. For whatever reason. I cannot judge them if they do not. Some start off by announcing and celebrating, until a routine scan brings the party to an abrupt end.

A problem. An anomaly. Or perhaps just unplanned leading to some very real difficulties for the mother/father.

Heart wrenching dilemmas.

So the language changes  as does the question. Often not from the parents, it has to be said.

The contradictions begin.

The word baby is replaced by the word foetus. It’s no longer a person to be looked forward to. To be celebrated. To be wanted. It’s a problem.

A fetal anomaly.

Unwelcomed. Unwanted.

A widely held view is that it’s not a baby at all. It’s a future person – according to Catherine Joynson’s recent blog reflecting on a report into Non Invasive Pre Natal Testing (NIPT) from Nuffield Council of Bioethics.

Not an actual person. A future person.

Yet, over 90% of the time, at the moment a prenatal diagnosis of Down’s syndrome is given, that future person becomes a no future person.

Women, couples, have a way out. It’s a very painful one. But it’s there, under the banner of choice. Autonomy – a word that has become sacrosanct. Termination is, invariably, the go to option.

The word foetus (fetus) in Latin means offspring. The bearing, bringing forth or hatching of young. It is a process.

And you will never convince me that it is in the mother’s best interests, (other than when her life is in danger) to help her to get rid of her offspring; to bring that process to an abrupt end. We owe it to women to find better ways to help and support them through birth and bringing up their offspring.   Instead, we – society – plays the choice card. The Ace of Spades. To end the game. Silence the opposition.  Kill the debate. The death card.

Choice has so little value when the menu has been limited. Is it really a choice at all…when there are so many external influences placed on women from all corners of society?

No, the question on these women’s lips is not “what will it be?”

They have been told that already. A Downs baby, disabled. A burden; a child with learning difficulties. A strain, emotionally and financially. Outdated and misinformed ideas fill their heads. And, like I did, they believe they couldn’t love a baby that isn’t perfect. They believe they wouldn’t have the strength or the resources to care for a child like that. They are almost certainly broken-hearted. Their dreams have been crushed. The party over, before it could even begin.

These women, these parents, are badly let down. My heart hurts as much for them as it does for the babies they had, perhaps, planned to celebrate.  They have no idea how much they would come to love their baby, their fetal anomoly, as I did mine.

We must surely help women to birth their offspring, not kill them.

To be or not to be.

That is the question.

dreamstime_s_86849970

To quote Lord Shinkwin, a disabled peer, speaking recently in a debate about Abortion on the grounds of Disability:

 “Well this fetal anomaly, this proud Member of your Lordships’ House, is having none of it. I utterly reject this medical mind-set that clings to the idea that a disabled baby is a medical failure to be eradicated through abortion. I beg no one for my equality. I know I have as much right as anyone to be alive”