When I tell sympathetic people the rubbish some people come out with about disability, people ask me, “Where do you find these people?” 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. But I’ve heard things most people wouldn’t believe anyone could say to another human being.
Disabled marriage was never _officially_ frowned upon in the U.K. although individuals, families, carers and Social Services could and legally can interpose their objections when they see fit. So although 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’ 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 useless cripple whose only function was to provide a foil for his noble self-sacrifice and be a drain on his resources- oh and be jolly grateful for his charity. Eventually I got up the courage to tell people that actually I was the one who managed the housekeeping, laundry, online shop and budgeting not to mention actually being someone that 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 in your own right. Last month, I caught some woman asking on a forum for teens with cerebral palsy most of whom were depressed about the prejudice they face and their life chances, a very unfair question; whether they thought she should have her newborn baby’s life support switched off because the doctors wanted her to make a decision given the baby had CP and ”what did they think she should do?” Tactless but in the midst of heartbreak we do things that horrify us in retrospect.
When we got married, 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, there you go, he assumed we would want to leave it out. On reflection we should have found another vicar or INSISTED they KEEP IT IN to remind people that we too can have children and live our own lives. Compared to friends whose vicar refused to marry them in church who had to marry in secretAt the time I was shocked but too busy with wedding preparations for it to really sink in and pre internet one did not have the networks and resources to say ”Did I just hear that?” So I chalked it up to ignorance and as pretty unbelievable in a world where at least those in power recognise that things like gay marriage do not in fact deserve the opprobrium we gave them fifty years ago. Things improve, a little- and then they go backwards. Yet for some of us they have never progressed beyond our communities’ own prejudices. My mother did not want me to have children, how 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.
In November last year we realised I was expecting a baby. However we lost her on 24th December. I wanted to mark her passing in some way- so I gave her a name, Helena Antonia. An ordinary tragedy and most people can just chalk it up on the family calendar as pain and sorrow and try again. But I was born with a disability, so it doesn’t work quite like that. 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, we were told to ‘make a decision’ before she was even born, refused to consider termination, 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?”
So we 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 Health Visitors followed by endless demands from Social Services to prove that we were capable or not child abusers 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 ‘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.
At least we tried. 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, that CHOICE to ignore all the ignorant cold water and well meaning hints- to at least TRY is so VERY important- Having tried 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 but …. to be ORDERED to have an abortion on threat of adoption, threatened with a surgical procedure if I ‘left it too late’ when the tablet taken in a pre-surgical procedure is a self administered tablet which the drugs I had taken for the tumour for 18 years could be accomplishing in any case and which combined with my existing medication could lead to potentially fatal poisoning or haemorrhage.
We tried, the midwives tried, even my sister tried to back me up. It would have been the best of the last 18 yrs whether she lived not at all or for one day, 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 the same week. As for Social Services and the GP., I realise now that the Doctors threat that they ‘might’ take our baby and could ‘give us no guarantees’ 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 my 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 friends have been put through the same or worse because of the same disabilities.
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: “No, 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 David said no, and she just looked through him as if he was not there.
After a few moments he said very softly and calmly, “No-one bullies my wife.”
I said ‘I want to talk about what medications to change to go ahead safely with the pregnancy not whether we want to keep the baby’.
Not perhaps very strong, 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 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 18 yrs not trying to have what we wanted, 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 listened, that I waited for ‘permission’ to become an adult.
But 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.