15 things only disabled people will understand (get annoyed by).

1. You use a wheelchair. It is not something you’re bound to and is actually just a slightly more convenient way of moving around.

2. Knowing the exact terrain of a certain journey by foot/wheel and precisely where every bump/ramp/jagged bit of concrete is.

3. Also the frustration of trying to find a kerb drop when trying to move on or off a part of the ground/grass.

4. Whilst you might love the idea of a hot sunny day, the thought of your skin on your lower back and legs sticking to your chair fills you with dread.

5. Being known as ‘the person in a wheelchair’ before any of your actual characteristics, but also knowing it’s a quick way to distinguish yourself from others; for instance when booking a hair cut, “I’m the mum in a wheelchair that you saw back in April”.

6. Not being able to watch or partake in simple events/groups purely because there are stairs.

7. Getting annoyed at your own clothes for not sitting right on your wonky body.

8. Denying yourself another cup of tea because the faff of going to the toilet again is too much of an inconvenience and you have other things to be doing.

9. People’s assumptions. Of everything.

10. Other people leaning on the handles of your wheelchair and the mini heart attack you have when you think you might tip back and die.

11. Not being able to visit certain friends’ houses because of the access or lack of downstairs toilet. Tea is always at your house.

12. Being mistaken for the 4th child when turning up at a restaurant with your partner and 3 kids.

13. Hearing waitresses ask your partner if you’d like to stay in your own wheelchair or sit on one of their’s. I can indeed answer that question myself.

14. Having a logical preference for certain types of table legs. And mugs. I’m not even going to bother explaining that and just leave it sounding weird.

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Weirdos.

So, Geneviève is now just over 6 months old, is eating solid foods, still boob-feeding and has just started sitting up. Every new day I look at her and can’t believe just how bloody cute she is. Blowing my own trumpet there, yes, but have you seen her?! I look at her grinning at her big sister and can’t get over the fact that I made them, we made them. I’ve kept the first one alive for quite a while now without damaging her, that’s quite an achievement!

And so a new kind of era has also just begun. We’ve taken on a new PA for me, one of my PAs has over the last year, become pretty unreliable and last summer we ‘recruited’ an ex-colleague of mine who has been magnificent. She has just had a change of circumstances in her family business and so is working less days with me, so we’ve taken on a new girl to fill in the majority of my ‘care hours’ (oh how I hate social care terminology, every part of my life becomes something which needs assessing, *shudder*). She is great and we are liking the new layout of the relative strangers who come into our house every day!
Which brings me to my next point. I lead a very weird life. I really do. When you think about it, it’s just so unnatural and odd… Every week day (or weekend if T happens to be away) I have someone come into my house when we’re barely up and dressed, the house itself is pretty much still asleep, blinds closed, things turned off, bedrooms still with that glamorous ‘breath’ smell that everyone remembers when they went into their parents’ room in the mornings. Don’t pretend you don’t remember it. And from that moment when we are greeted by someone who is already ready for their working day to start, they’ve driven here, woken up and become part of the outside world again when we’re still yet to pull ourselves together. We’re kind of used to it now but it honestly doesn’t seem any less weird. I’ve had PAs of some sort since being in primary/secondary school/college and having a ‘helper’, and then graduated to having a PA in university to help me with the physical aspects of uni itself and also in my room and to do washing, cook dinner etc. Suddenly but gradually my life became not so personal any more. I had to become comfortable to pee in a room with a relative stranger, purposely making a joke about not caring about that kind of thing any more (when really I do, I’d much rather pee alone) just to attempt to make the other person feel an ounce more comfortable themselves, because let’s face it… It’s probably just as odd to accompany someone having a wee as it is to be the wee-er.
This is just the tip of the iceberg, there is so much more that I don’t quite have the stamina to explain. But I challenge you this – from tomorrow morning, grab a note pad and pen and write down exactly what you do for yourself. I mean everything. Can you reach yourself a dry towel for when you get out of the shower? Which towel? Where do you want that towel placed for when you need it? Before that, can you even get in the sodding shower and turn it on by yourself? How hot do you like it, what angle do you want the shower head pointing. Every little thing has to be mentally planned out, and if needs be, told to whoever is helping. I’m a dictator for myself, in my own home. That. Is. Just. Weird.

One more question, how much milk do you want on your cereal? Metric/imperial units of measure not allowed.

I cope so well!

I cope so well, apparently.

Twice this week I’ve been told how well I deal with being a mum. First was a (lovely) nurse whilst I took Geneviève for her immunisations, who said “you do so well to breastfeed her”. Now I know that she meant it as a compliment and was intended to make me feel good, which it sort of did. But it also sort of didn’t.

The second time was today, a grandmother at a baby group that I would normally be running myself if I wasn’t on maternity leave, who said “You cope so well”. I’d never met her before, and it was the first and only thing she said to me on the way out of the door with her daughter and baby granddaughter. I’d only arrived 5 minutes beforehand, so aside from those few minutes where Geneviève was crying at a rather inappropriate volume and I was trying to soothe her (unsuccessfully), she didn’t really witness much of my parenting skillset. Yet she still said this to me, also with complimentary intent of course. The thing is, everyone else in the room all but stopped talking to look and see my screaming child and to mentally process just how well I was coping, no matter how subconsciously, of that I have no doubt.

But it got me thinking… If I wasn’t so obviously a disabled mum, would people be so quick to compliment? What about when people see me frantically trying to rock a Sainsburys trolley back and forth to soothe the afore mentioned Geneviève while Tom has gone to get something in another aisle, would they think so highly of how well I do then? Do people assume I’m going to fail at every hurdle and melt onto the floor in a heap screaming “I can’t dooo this!”

I’ve wanted to do that a lot lately. But don’t tell them that. But what would happen if I had a baby and didn’t even attempt to breastfeed, to burp them, to soothe them, to play with them? Isn’t that just what every parent does, or tries to do?

One part of me smiles gratefully and says thank you to the compliment-weilding stranger, while inside the other part of me is wanting to challenge them and say, “Well, what were you expecting? Would you say that to an able-bodied parent?”

But that just sounds awfully ungrateful and unnecessarily antagonistic. I just know I’m going to spend a great many years arguing with them in my head and never being bold enough to say anything. Dammit.