“They do not live their lives by your leave’. They hack them out of the wilderness, burying their children as they go”. (Last of the Mohicans [date – film])
In November last year we realised I was expecting a baby. However we lost her on 24th December. We wanted to mark her passing in some way so gave her a name: Helena Antonia. An ordinary tragedy and for most people an early miscarriage is a painful mark on the family calendar and as pain and sorrow recede (however long that takes) you pick up the pieces and try again. But I was born with a disability, so it doesn’t work quite like that…
When I tell sympathetic people the rubbish some people come out with about disability, people ask me, “Where do you find these people?” but they are just ordinary people, sisters, mothers, co-workers, strangers, teachers and shopkeepers. Sometimes quite nice people who in every other way are intelligent, compassionate and educated. And yet….
When my husband and I got married in 2002 , the vicar, a friend of my mother’s, told us he could leave out the ‘procreation of children’ bit from the marriage service. Not that we asked him to, we planned on children, but he assumed we would want to leave it out and that my tears were because as a disabled person I wouldn’t be _able_ to have children. On reflection we should have found another vicar or insisted he keep that part in to remind people that we planned to have children and live our own lives. Compared to friends whose vicar refused to marry them in church because of the wife’s disability who had to marry in secret, it didn’t seem like much at the time. Sad. Ignorant, and if you happen to think about it pretty unbelievable in a world where those in power have begun to recognise that ‘mixed marriages’ and same-sex marriage never deserved the opprobrium heaped on them fifty years ago. Disabled marriage was never _officially_ illegal or prohibited although individuals, parish priests, ‘concerned’ families, carers and Social Services could (and do) interpose their objections wherever and whenever they saw fit. So the idea that I would not cope with _marriage_ was never specifically broached, though after we married I found that individual after individual would praise my husband to my face for ‘putting up with me’, ‘managing me’, and ‘not minding having to do all the housework’ (I did plenty t though I admit he is a far better cook than I am.
Being young and with too few opinions of my own, I put up with it and the steady drip-feed of implication that my husband was a saintly carer for a somewhat broken disabled person whose only function was to provide a foil for his noble self-sacrifice and be a drain on his resources, and be jolly grateful for his charity. Eventually I got up the courage to tell people where to get off, that actually I was the one who managed the housekeeping, laundry, online shop and budgeting, not to mention actually being someone who my husband enjoyed spending time with. They didn’t listen of course, it is a truism of cerebral palsy that people seldom do listen, even if you are a Masters graduate, a writer and part of a family unit in your own right. Things improve, a little and then they go backwards. In November last year we realised I was expecting a baby. However we lost her on 24th December. we wanted to mark her passing in some way so we gave her a name: Helena Antonia. An ordinary tragedy and for most people an early miscarriage is a painful mark on the family calendar and as pain and sorrow recede (however long that takes) you pick up the pieces and try again. But I was born with a disability, so it doesn’t work quite like that…
First of all, not only the vicar but my mother did not want me to have children, now other people with no medical knowledge whatsoever assumed it would be a bad idea and how I fell for it because the information we had on my medication and the risks to my health or a baby’s was incomplete. Last month, I caught some woman asking on a forum for teens with C.P. (most of whom were depressed about the prejudice they face and their life chances , so a very tactless question) whether they thought she should have her newborn-baby’s life support switched off because the doctor wanted her to ‘make a decision’ and what did they think? And then the baby died anyway. Broadly, a similar thing happened to us. Before we had even seen a midwife, before we had really registered the possibility in our brains that something this amazing was happening a mere 18 months after we decided that prejudice and ignorance were immaterial, and we would damn well do what we should have done when I was younger and fitter before it was too late and start a family my own sister had just got engaged) , we were told to ‘make a decision’ before she was even born, refused to, then lost her anyway. We got on with hospital appointments four times a week and thinking up baby names and fielding elderly friends who tried to make me eat for two and finding new cures for crippling nausea when I failed to avoid “just another mince-pie, dear,” and solutions to that issue that perplexes all able-bodied family members of disabled people, “How will you get the baby down the STAIRS?” And only cried in private when we discovered what was written in my medical notes and when we discovered that what our own GP had meant by “all the help and support you need”, amounted to pretty much nine-month surveillance by a health visitor, to be followed by endless demands from Social Services to prove that we were capable or not child abusers. We sobbed and rocked in each other’s arms as we discovered other families who had been through what we would go through, that _yes_ they could indeed take our baby away purely because ‘someone’ thought I was a potential ‘risk’. And that someone so cold and hard and _bland_ could demand that we end something we had wanted for fifteen years. And all the time we still knew that we had a better than average chance of a miscarriage, in any case. At least we tried… That is what we tell ourselves. At least we were the lucky ones, people who managed to conceive and that I realised that I had been falling for the subtle prejudice that is so much more insidious than abusive language or inaccessible doors. At least we _woke up_and I know I am a _person_.
You see, to anyone born with a disability who has always been told they are somehow ‘not good enough’ to have children no matter how many exams they pass or responsible jobs they have, no matter how minor their disability or how ‘hands on’ their partner is, there is a huge hurdle that has to be got over, the idea that YOU could never make THAT particular choice for yourself and that to choose to have a child would be a tragedy for all concerned. You are told what a jolly good thing it is that you have such a _caring_ partner by people who are very careful NEVER to say that you would make good parents. If anyone should mention children or if (God forbid) you should suggest having them you are reminded how _easy_ it would be with all your medical problems to produce another little burden just like yourself and how very _difficult_ it would be for you, but PARTICULARLY how much of a strain it would place on all the people who would obviously have to do all the REAL work of caring for a baby. If you are really lucky you will have good friends who understand that all this is rubbish and openly remind you of this, but if like me you are used to obeying orders and following other people’s opinions, you may spend years accepting this as a painful but reasonable gospel and even spend time constructing your own arguments against parenthood so that friends and family think that being a single income no kids family was your ownchoice all along.
To make that choice to ignore all the ignorant cold water and well-meaning hints to at least try and to throw myself into something for the sheer love of it and the sheer wonder of the experience whatever ‘might’ go wrong is so very important and the most amazing thing that has happened since even before I met my husband. Having tried to do this one thing despite the naysayers, makes me feel so much more has happened in my life, that I have experienced so much more that I have been an adult woman and been treated as an adult woman and no-one can take that away.But …. to be ordered to have an abortion on threat of adoption, then when I refused , to be threatened with a surgical procedure if I ‘left it too late’ (when the pre-surgical procedure is a self-administered oral and vaginal poisoning which the drugs I have taken for a benign brain tumour for the last 18 years could be accomplishing in any case, that is a cruelty that makes any stone-throwing, name-calling thug or government minister on a Welfare Reform-kick look like a picnic. WE tried, the midwives tried, even my sister tried to back me up. But someone, just one doctor amongst many other sympathetic and downright optimistic medicos made the reality of discrimination come alive with the most bone-shattering, heart-twisting, bile-swallowing clinical coolness I have ever seen -and I have been prodded by the surgeons of Children’s Orthopaedic!
It would have been the best part of our lives whether she lived for one day, stayed by my heart for one month or five or the forty weeks I never managed to be in the womb myself, or even had she passed without any acknowledgement of life at all, but they had to make it bitter as gall. And even that would matter a lot less if we had not had news of our nephew’s death by suicide as a result of an botched asessment for disability benefits the same week we had confirmation of the miscarriage, so that there was no time even to assimilate the possibility of grief. As for Social Services and the GP., I realise now that the threat that they ‘might’ take our baby and could ‘give us no guarantees’ against this, meant that they MIGHT have tortured us with threats and false promises for whatever time we had with her. But somehow, despite the tears and the fears, the pain of finding out that the Dr. was trying to use my past mental health as an excuse to force my hand when for YEARS they had used my physical health as an excuse to do nothing and when I _know_ that other physically disabled friends have been put through the same or worse using the same arguments but citing as excuse the same disabilities as mine, somehow in all this I managed to feel more WHOLE than I have ever done before.
I was more prepared to face prejudice than my husband. As an able-bodied man of an era when people were at least polite and less direct in their nastiness, he finds all the disability hatred so shocking, but it never went away, just underground. When the blow fell, I was very cool and calm, as calm as I have ever been in my life I was fighting for a life, so…. I simply kept saying “No”, to the Doctor until my husband came out of his trance of horror.I said: “We are here to sort out safe medication for the pregnancy and to book a midwife,” The doctor pushed a pile of papers at me to sign, I said “No” and my husband said “No”, and she just looked through him as if it was nothing to do with him.
After a few tries he said very softly and calmly, “No-one bullies my wife.”
I said, “Now can we talk about what medication to stop if we want to keep the baby?’.
Not perhaps the most decisive way of conveying that I would never in a million years consider abortion but I have never been so calm. I stayed that way until about a week after our nephew’s funeral. Then our usual GP said that I, “needed to grieve” and that seemed to open the floodgates. But frankly, am not grieving a death or a miscarriage am grieving a generation of evil and eighteen years of wasted time NOT trying to have what we wanted most from our marriage, grieving the hypocrisy of our families who insisted I stay on the Pill while my sister and brother started families. Most of all I am grieving that I ever listened to other people’s strident opinions and never gave my own, that I waited for their permission to start a family as though two adults need anyone else’s leave to do such a thing. We do not live our lives “by your leave”. We hack them out of a wilderness of prejudice and ignorance burying our hopes as we go.
I’m appalled that after all we have gone through that either of us should feel in some way – in any way fraudulent parents and yet we do. Those with even experience of sorrow are lacking for they are the ones who wound us time and time again and they are the ones with the privilege of placing all those perspectives of perfection and normality on our backs. And yet…still I stand next to those who have held their babies in their arms and know I will never, never be allowed to, I am in that club of bereaved parents and yet somehow I still feel a fraud because others held their babies and because I was told that should I ever hold her she might be taken into care. An unbearable exclusive club of ‘not good enough’ and one in which I still find those who say, who say, “Oh well in HER case it’s better”. But Stillbirth and miscarriage groups can pull your guts out through your mouth with the way they talk about losing a disabled child and I see it all the time and I don’t know whether to be glad for the parents who are presented with decisions and support or wrenched for them in case like me that well-meaning “Oh well, don’t feel guilty now they won’t suffer” cuts as deep as it does in me. One of my friends was defending the ‘pain and suffering’ angle with the added authority that a medical background gives to arguments and I was left wondering how the hell you split your heart between natural grief and the scientific and medical community feeding your family the validation that you can move on because this child would only have suffered. And as both an empty armed mother AND one of those people who is a reminder to others that parenthood sometimes ends with imperfect situations, I want to validate you if you too find yourself here, if this isn’t the club you wanted to be in. I know what you mean, when you describe those who even with the experience of miscarriage behind them or of a long hard road to get pregnant or even multiple miscarriages seem to forget that pain and whose statuses become a litany of “Woe is me another sleepless night” or “I have an essay to write and the baby won’t settle.” Yet that essay, indeed taht whole degree course seemed so unimportant and empty when you were grieving yet another miscarriage.
There is a woman I know who does not do this. Who is fully aware of her privilege as a mother. A mother whose friends probably pity her and who I have seen go from a drained depressed and silent woman when all around were happy and on a holiday to a mother who looks as though she has become just who she was supposed to be and as far from the club of ‘woe is me my child is disabled’ as it is possible to get because after two stillbirths and numerous miscarriages her son is breathing and talking despite the fact that the Doctors (as ever) claimed he wouldn’t (just try stopping him showing you the gears on his new grown up wheelchair – I even learnt things about the model I have that _I_ didn’t know! Many probably think his slurred speech and his chair are a tragedy but one look at this transformed woman and you know that’s the most ridiculous thing you could think.
I feel such an outsider amongst people who grieve a loss of a pregnancy but then go on to gripe if their baby is not ‘perfect’. I had the temerity as a baby to survive when what you are supposed to do is be no trouble to anyone so that they can ‘get over it’ and move on.
I’m trying desperately to even feel I still belong to even this unwanted club because of all the validation here that it was ‘all for the best’ because I would (or so I am told) have been a terrible mother, because disabled people are automatically a burden and a tragedy, that we are less mothers than burdens to our families and the state that ‘in our case’ terminations are ‘better’ that switching off our machines is acceptable, that terminating our pregnancies is best for the state and for us, in that order. We are the club who refuse to feel like the unwanted and awkward but it’s as taboo as it gets to not accept that loss as a given and anything more on the subject only alienates the few friends who understand even a little. To be a disabled disallowed parent even lacks a descriptive language we all recognise. We are a taboo group amongst a taboo group and it’s as lonely as it gets. And as both an empty-armed mother and one of those people who people regret the existence of as a reminder that parenthood sometimes ends with imperfect situations, I want to validate you if you too find yourself here, if this isn’t the club you wanted to be in.