Disability. And ‘define normal’.
It’s something that is regularly discussed at the moment – whether it’s in relation to the Government and their changes to the benefits system, or Channel 4’s new series ‘The Undatables’ (a rather misleading name I think, and watching it on and off last night I couldn’t make my mind up whether it was good for portraying some of the problems faced by the participants due to their particular disabilities, or bad because its basically just another ‘stare and point’ show – and some of the comments on twitter about it were rather derogatory and unflattering to say the least).
Whatever the Government decides, and whatever Channel 4 broadcasts, there is no denying that disability has an impact on the lives of myself and my family – not in terms of benefits, not in terms of whether I can get a date or not (given that the Other Half and I have two kids who don’t like sleeping I’d say that’s the main barrier to going on a date at the moment!) but just in terms of the way we live together as a family every single day.
I have Ehlers Danlos syndrome (sometimes called Hypermobility Syndrome). It’s not something that’s immediately obvious to people, and therefore a lot of people who don’t know about it just think I’m lazy, or a bit clumsy. Sometimes, when my kneecaps or hips are threatening to dislocate, and I can’t stand up on the bus, old ladies mutter and tut because I’m taking up a seat that they think they and their enormous shopping trolley should have. (There I go, stereotyping the old. Actually, people round here with shopping trolleys seem to be getting younger and younger. In fact, I have a shopping trolley myself – its called a pushchair!).
Ehlers Danlos is basically a disorder of the connective tissue. Its more stretchy than other people’s. Often people say to me ‘well that’s great! You can bend yourself into all kinds of crazy shapes!’. It’s true, I can bend in odd directions. But when you think that everything in the body is connected together by tissues of one type or another, then you might be able to see the problems start emerging.
My joints dislocate very easily. My knees hyperextend (bend backwards) and collapse often. My ankles are bendy and often twist inwards, causing me to fall over. My hands lose their grip on things and when they do grip, can’t grip very strongly. My skin bruises very easily, and added to the fact that I’m very unco-ordinated and unbalanced, I’m normally a patchwork of black, purple and green splodges. Walking around is an effort and I get tired very easily – hence the ‘lazy’ tag. My jaw dislocates itself which is painful and can cause problems with talking. I’ve broken a lot of toes as they’re always bending and getting caught on things, and I can’t wear heels or flat shoes – only shoes with an arch support.
So – although you can’t actually see my disability as a physical impairment, you can see it if you look at my lifestyle.
Everything I do with my children has to be carefully thought through. I can’t go anywhere busy without both of them strapped into a pushchair, because if the Wee Man chooses to run off then I can’t run after him, and if we are out without the pushchair and he decides he doesn’t want to walk then we are basically stuck, as I can’t carry him. Strapping them in can be a problem too though, as my hands aren’t strong enough to undo the clasp, so I usually have to rely on the kindness of Children’s Centre staff or other mums to help me get the kids out of the pushchair again! Some days when my knees are particularly painful or weak I can’t drive, and walking isn’t really an option either, so we are stuck indoors.
In the mornings, the Other Half has to help me get them dressed and I have to make sure their clothes don’t have any fiddly buttons or poppers as often I can’t undo them or do them up. Nappy changes that might take other mums a minute or two can often take me up to fifteen. Mornings are often the worst time as I seize up during the night, and often sleep badly due to the pain in my knees, hips, back, jaw…
I don’t carry Bubby D around much unless she’s in a baby carrier or sling (and therefore firmly strapped to me) in case I fall over, or my knees give way, or my hands lose their grip and I drop her. If we are at a toddler group I have to try and make sure that I can get a chair to sit on or stay standing (which I cant do for too long), as levering myself off the floor can take several minutes – not ideal when your toddler is busy rampaging on the other side of the room.
Pregnancy was a difficult time as the hormone relaxin, released to help the hips loosen in preparation for giving birth, causes everything to become even more loose in my case! With the Wee Man, I was on bedrest and unable to walk for the last few weeks. For Bubby D, although I had SPD (symphis pubis dysfunction) again, it was to a much lesser extent thanks to intensive physio and regular aquaerobics. The problems don’t stop there – once I’ve given birth then establishing breastfeeding is a bit of a mission. This is because Ehlers Danlos causes oversensitivity to hormones, which means when the breastfeeding hormones are released milk production goes into overdrive and I have a lot of oversupply. Not easy for a newborn to deal with!
People who don’t know me have sometimes aimed muttered barbs in my direction… ‘she can’t look after her kids properly, terrible how she’s letting him run riot and not getting up and doing something about it’ or ‘look at the state of those children’ (sometimes, after the umpteenth time of wiping up after them and changing clothes I just let them stay a bit grubby, because I know if I change them into pristine clothes they’ll be grubby again five minutes later anyway). And of course, look at the state of me, too. My hands are too painful and not-working to straighten my unruly hair, and even washing it is quite an effort so there’s no surprise its often looking a bit dragged-through-a-bush like. My eyebrows are only waxed when I can afford it, I can’t pluck them myself due to my terrible co-ordination and lack of hand strength. Much like my kids, I might be a bit grubby too – I’m a bit of a mucky pup when it comes to eating (the fork falls out of my hand, or I miss my mouth…). Anyway, you get the idea. I’m not going to win a ‘best dressed’ award anytime soon…
It might all sound a bit like I’m whinging about nothing. I know there are lots of people out there far worse off than me, and in general I just try and get on with life and enjoy what I can do with my children, rather than what I cant. My main concern is for my children – making sure they are safe and happy, and also of course hoping that they haven’t inherited the condition from me. Every time Bubby D cries and tears are pouring down her face, I wonder if its because she is in pain, like I am, or whether she’s just a bit tired, windy or hungry. The Wee Man has been diagnosed hypermobile but it’s too early to tell if that’s all, or whether he has the syndrome too.
So, next time you see a tired and frazzled looking mum on the bus (or anyone tired and frazzled looking on the bus!), or a mum that’s not so speedy about running after her marauding kids, don’t necessarily take things at face value. Yes, she might just be tired and frazzled because she’s a normal mum living a normal mum life. Or, she might just have a hidden disability that you wouldn’t know about just by looking.