I’m getting tired of ads on Facebook for things that are the opposite of what I want to see. It would seem that to avoid seeing pregnancy ads showing smiling ‘normal’ mothers and gummy ‘normal’ babies plus adoption ads (which just incidentally wrench my guts apart) I would have to ‘unlike’ all my groups to do with disability and parenting. The fact is, I support disabled parents groups like ‘The Disabled Parents Network’ and ‘Parents in Wheelchairs’ because I do NOT fit the image of the perfect parent or the unspoken idea behind those perfect parent images that you should never attempt a pregnancy if you are less than perfect.
For many years I thought that I should not become a parent because the subtle (and not so subtle) message of society is that disabled people cannot be good parents. It would be nice if we saw more pictures of Mums in wheelchairs or on crutches or with assistance dogs with the kids in tow but THIS is not what others want to see. I should never have been told some of the things I was told, never had the, ‘um, ah, er’ response when I talked about having a family, never been refused a meeting with a midwife or a gynecologist when I wanted to find out more about how my CP might affect a pregnancy. somehow the fact that this was not about MY competence to be a mother but how people see disability passed me by. I join these groups because I want to see more disabled parents out there not more reminders of what society considers the perfect parent to be. I join these parenting groups because ONCE I was a mother to be, and am not now, and my fear is not that I CAN’T conceive again, or even that I might miscarry again and again but that I don’t dare to TRY again, with the threat of one unenlightened GP hanging over my head as a bad dream which I don’t wish to come true. So baby clothes ads are a painful reminder both of our lost baby and of the GP who wanted me to ‘make the decision’ to have an abortion ‘as soon as possible’ because I have had depression during which – due to incorrectly prescribed anti-depressants- I became aggressive. I have spoken to too many other disabled women (and men) not to suppose that if I had not had depression, her excuse would have been my cerebral palsy or my prolactinoma.
I REALLY don’t need adoption ads flashing up to remind me that disabled kids need homes or that we can give a stable home to a child without one. It is a sad but little-known fact that too many of those children ‘in need of homes’ had stable loving homes, it’s just that Social Services didn’t see those children’s disabled parents as capable of providing stability or normality’. Disability-and-parenting sites are often about the constant struggle to be a parent, to match up to ‘normal’ parenting standards (often whilst questioning them) and about how to acquire and demonstrate ‘normal’ parenting skills with the fear always hanging over you of ‘failure’ by the standards set by society and the ‘authorities. Pregnancy for the disabled mother-to-be is about grabbing what is there of the much publicized ‘bliss’ of pregnancy while fighting against the added fears; further illness or disablement with the burden of knowledge that people will see any worsening of your health overall as ‘proof’ that you should never have attempted pregnancy ‘given your problems’. A disabled pregnancy means additional and obsessive monitoring by doctors of what it is automatically assumed will be a potentially ‘difficult pregnancy’ and above all fighting against the fear of forced adoption if in others eyes you are seen to be “not coping”. Disabled parenting takes place in the often unspoken-of shadow of those families who have been denied the opportunity of parenthood through negativity, stigma, lack of support, forced adoption, forced abortion or forced sterilization.
Joining disability parenting groups unsurprisingly does NOT flood you with ads on disability equipment for disabled parents to be -those have to be searched for with the aid of endless Googling -and endless dead ends- and through detailed conversations with the handful of folk who have gone before you. Disabled parenting groups discussing the agonies of having your child taken away because you are blind, or deaf don’t trigger ads about lawyers expert in the field of disability parenting rights, they don’t trigger links to doctors surgeries who are pro-disabled parenting or disabled parenting classes. Why not? Because these experts are few and far between. Google ‘disability and parenting’ or cerebral palsy and parenting’ and you will immediately be directed to links about being the parent of a disabled child or adopting disabled children with cerebral palsy. There are no ads directing you to sites for parents with C.P. There is little provision in any disability discrimination legislation for disabled parents, indeed many disabled people would probably say that the Disability Discrimination Act never made much difference even to disabled access, since by the provisions of the Act itself small businesses and individuals are exempt from its ‘requirements’ and individuals on the street who abuse, denigrate or stonewall a disabled person can pretty much do so with impunity.
By comparison with the usual barriers and stigma meted out to disabled people, having a child might be considered a drop in the ocean of difficulties, if it were not for the horror that the suggestion of disabled parenting usually provokes. The first comment any woman with disabilities planning a pregnancy is likely to hear is, “Won’t it be a lot of work for your husband/family/carer?” Yes, the prospect of any pitfalls or extra work for him fills me with dread and yes, I struggle more with things than I used to because a lot of the support packages that I had as a teenager or a student are no longer providing the backup for me to live as ‘normally’ as I would like, no, it would never be easy and I would not be doing myself a favour if I ended up hospitalised trying to do the impossible, yet it never occurred to the naysayers that doing the impossible has been pretty much obligatory in every other area of my life for the previous 25 years, so why is this area of life ‘out of bounds’ ? My cerebral palsy has always been (until now) considered ‘mild’ but I still had other brain injuries, (what I now suspect is dyspraxia as well as dyscalculia) hip pain that made getting around and a ‘normal’ school and home life more tiring than anyone else ever imagined and later a ‘benign’ brain tumour which was more exhausting than even I could imagine – and they used to make me join in the school cross-country runs!
I went to college and university and always had to give a hundred and ten percent, and always felt full of energy unless I was walking with other people when I found it a struggle to keep up. My pituitary tumour (diagnosed when I was 18 and just starting at University was _I feel_ the direct result of years of overwork and worry and trying to do too much with disabilities and health problems that others chose to see as ‘minor’. Once I could no longer be a superwoman and was pretty much confined to bed for 5 years with a crippling fatigue that even the specialists could not explain, all I ever heard from friends, family and sometimes doctors was what I ‘could’/should be doing if I tried. One doctor even told me I could climb Kilimanjaro if I just got a backbone”. I’d BEEN climbing my own personal mountains for years with no credit – they weren’t awake at 4 am when I put the extra hours in, THEY weren’t on painkillers to get through the school day. So WHY is this one thing that other women take for granted considered such an impossible, unthinkable, insurmountable challenge?
The reason, I suspect that I am endlessly asked “But how would you cope with a baby?” but was never asked that about any of the jobs or projects they so glibly suggested that I take on while suffering crippling fatigue or pain is probably the same reason disabled people thirty years ago living in segregated ‘homes’ were told they could never cope in the outside world. Provision for disabled parenting is so much in its infancy, and so patchy that in their ignorance of what the answer ought to be- access to services for disabled people wanting to become parents- many people simply assume that if it is not often attempted, then it ought not to be. Having a baby is considered so ill-advised and ‘ha- hummed’ over so naturally by so many family members, complete strangers and ‘friends’ that it becomes as much an accepted fact that disabled parenthood just isn’t done, as that marathons and mountain climbs ARE what we do best.
However brave, courageous, remarkable and ‘inspiring’ it is to keep on knocking yourself out on treks through Peru or up Kilimanjaro, isn’t it unfair to suggest that we SHOULD have to knock ourselves out ONLY in the ways others want us to? Many people are so ready to tell people with cancer or with disabilities to run marathons, keep right on and be heroes that they don’t ask what the price might be or whether that person might like to be fighting the battle in their own way or climbing a very different mountain or running a very different race. Any deviation from the usual ‘marathon’ just isn’t the done thing. I don’t begrudge the challenges I met as a child or as a teenager or a young woman but I met them for me, I didn’t do them so that other healthy people could feel good about my efforts.
One of the toughest things about having an illness or disability is when people talk about someone else they know with the same disability who ‘did something amazing’. rather than congratulating you on being a fulfilled housewife/mother/writer. Well done, of course, to anyone who CAN run a marathon, three cheers for anyone who DOES, but three million cheers for anyone who knows when to stop and take a breather, smell the flowers, hug someone, chat and just BE or to run the ‘marathon’ the way they want to. The expectation that cancer survivors WANT to run marathons, that someone with cerebral palsy’s dearest wish is to be a wheelchair athlete or a high-flying executive, makes everyone who can’t or doesn’t want to do those things alongside their own disability or illness feel a failure and stops people from seeing the challenges they would like to take on. YOU are not just an ambassador for cancer or for your disability, you are YOU and if you want to fight the STIGMA of illness, the stupid things people say, their unfair expectations or the now notorious ATOS assessments, go right on and do it. If you want to fight it by living the life you would have had (i.e a life without the expectation to run a charity marathon) then choose the roses round the door, the chickens and the one, two or three children. If your way of fighting cancer or C.P. today is to sit at home with a bar of chocolate promising yourself not to crumble, do it. You are even allowed to have someone else to catch you.
As a society we have always allowed people proportionately more time off for a bout of flu than we do for recovering from chemotherapy, from a brain tumour, or from the daily grind of fighting a permanent disability and that takes its toll, mentally, physically and emotionally in the longer term and more importantly dictated what problems qualify for empathy, support or time out . We as disabled people don’t allow ourselves time off after a crippling ‘day out’ or emotional visit to yet another consultant at a time when we are already buckling under with stress, have had a family bereavement or simply have so many minor worries that our heads are in a spin. Taken on its own that appointment to see a consultant may be for something fairly minor, that blood test MAY be clear but our minds and bodies take the toll because we were taught ‘not to make a fuss’ and because ‘everyone has their own problems’ and so we keep battling on.
Or do we not allow enough time off for cancer or disability because people in a crisis have to be superhuman so that others feel that when crisis hits them, they too will be all right? That of course, disability is easier than flu, you ‘get used to it’ if you’ve had it all your life, that cancer comes with a special bravery shot, that it just goes to show, you can do anything if you want to, there are no limits, if you push yourself hard enough you can overcome anything…’ If that is true, then I should have climbed MY mountains, set MY feet running on MY paths to MY winning tape… Did I really want to be doing the impossible to fulfil someone else’s stereotyped dream for me whilst buckling with exhaustion and getting no sense of achievement from it?
If not, let’s change the rules! I’m not saying be lazy- I’ve never met a disabled person who was lazy, yet and I hope I’m no exception, but I believe we have the right to say what our limits are and to change how other people see illnesses of all kinds. Let US say how it’s going to be, not society! You are an individual and if NOW is not the time to say how you will live your life, then WHEN? The odd thing is that when YOU decide what part of your life you want to be great at, whether it’s going swimming until you feel ready to cross the Channel (maybe by swimming it, maybe just to get enough stamina for a day out in Dieppe), or spending more time with your loved ones to make you all feel special instead of just battered by circumstances and beleaguered by social norms, if it is learning to love yourself or mastering a new skill (even if it is a skill that others take for granted like cooking or making the tea or making time for YOU) , if you do it for yourself, not for others expectations of you, you may even find that after all you have done something amazing. If you aren’t looking for the credit, or needing praise, or caring what others think about your achievements or what you ‘should’ be doing you’ve probably found the key to all success and suddenly people WILL start saying what a wonderful job you are doing!
Whether or not it is too late for me to be a disabled parent, or even if I decide NOT to be a parent at all, I will always consider myself to be in the disability rights fight, 100% committed to changing things for disabled people and every breath I take is an affirmation of that, even the deep breaths of rest and relaxation or the rare Saturday morning spent in bed while feeling fine. Sometimes a fight for disability rights may mean trying to change things will take me away from signing petitions against Welfare Reform, or NOT writing to MPs who won’t listen, because before we can change attitudes to welfare or to disability and work we need to change attitudes to disability in the home and in the family. Far better to be a happy disabled mother in a world which looks askance at a Mum in a wheelchair or a mum with some cognitive disabilities than have years of depression CAUSED by feeling yourself to be useless, without a job when the only job you wanted from the day of your marriage was motherhood. Far better to get on with THAT and have had a child who takes a deaf parent or a parent in a wheelchair in their stride CREATING the next generation of disability activists out of the children of disabled people. Able-bodied (or not) they will be children who have learnt the VALUE of all human lives whatever their differences or varying abilities.