“But….. How Will You Manage?” Surviving The Naysayers (and the Holidays)

Join me in an Arrrgh?

ARRRGH!

How would you cope?” I get that AS a person with CP and yes, it’s always folk who know nothing about your life. It took me _years_ to learn that and everyone from my mother to my best friend poured cold water on any project that wasn’t in step with what THEY thought was right for me. Where were you all my life, people who get this too? I spent years feeling deflated and demeaned instead of kicking the ‘how would you’s out! And yet the minute you fall into their moan and join in they tell you that you’re really very LUCKY considering” (but that’s another story!)

All the people who suddenly thought my ‘poor’ husband must have ‘sooo much to cope with’ the minute I got married… “Well, obviously he loves me and it’s no big deal for him, maybe YOU just do it for medals?” Even though all my life they’d downplayed my CP suddenly it seemed that a man who did most of the cooking (because he’s a better cook) deserved a halo. What I should have said of course was, “You mean men can’t cope unless a woman does ALL the cooking?” Instead of which, I felt diminished!

Joking aside, when you LOVE someone its amazing what you can do that others who see other people as a perpetual drain on THEIR time can’t! As my friend said about the time her toddler got away from her and fell into a pond- “it’s amazing how you learn you can levitate  horizontally AND fly when your toddler is heading at speed for that un-fenced pond !”  Yes going abroad with a disability takes forward planning but -people do it all the time! Sometimes you’re more tired than if you’d be if you’d stayed home – that’s a genuine issue for some folk. – and I do worry when I go camping with my DH that he gets tired. BUT it’s no big deal for him, he likes spending time with me, just like the thought of seeing the sites with your kids thrills you.

It took me _years_ to learn that it was just a twisted way of saying, “I don’t think I could or I don’t think you should because I know nothing about it”. This confirms my feeling that the ‘how will you managers’ are the type who spend time with _their_ friends and family for what THEY get out of it and purely to relax in fact some people resent spending time with disabled people because they cannot pretend that life is all glitter and rainbows. Sometimes we do have to cancel, go home early, want to talk about Welfare reforms and don’t think a hard life is not being able to afford a second home in Umbria! These people think their life is tough, that they are hard done by BECAUSE they “have to” get up, go to work, help others and interact with people who don’t think THEY are the centre of the universe. It’s just not so apparent until they meet a disabled person and have to project what a drag doing things for others is onto us!

Do they do it with bad grace? You must do it for medals?  Are they mediocre, you must be saintly!

Whether you’re a carer or a parent or a disabled person, it is their own inadequacy which forces them to make YOUR life look like a big deal. If it is a major effort deserving a halo having a disability or being a carer then their life must at least be pretty tough and deserving of sympathy. OK. We deserve halos for putting up with comments like THAT, there are things everyone needs a can of ‘glo halo’ for ….It’s the same impulse that makes them think that ‘everyone would have to do everything if you had kids’. It was always the people who hadn’t had kids themselves or were not natural parents who were the ones who told me that it would be too hard for me, never the ones who enjoyed parenting and had happy well-adjusted kids – imagine if I’d done a BETTER job than they did and thereby showed them up – so me parenting with CP _must_ be a burden for others…. (funny how I did all my own stuff at Uni?.

Thank goodness in the end we see them for the toxic people they are.  The fewer people like this around your kids the more he and his sister will grow up to give them an old-fashioned look when they try it on THEM. These are the ones who say to your child’s face “Your mother must have had such a lot to cope with.” I’ve had this said to me and I’ve even had it said to me by disabled people. I’m a bit of a self pitying type myself given how mild my CP was and that’s largely down to my mother’s negative attitudes and the people who stood around looking saintly that they had to put up with me. We could have got on with it but we were the kind of family where everything’s a drama.  Again they are indeed expressing that THEY would feel inadequate to tasks that parents of kids with CP, partners or the person with CP would find easy because if your part deserves a halo their role as a ‘friend of that poor family’ will look appropriate, average and pretty good instead of the patronising rubbish it is. I’m working on a blog post about this and as it is obviously an issue that parents too come up against, I’m even pleased that it’s come up as it’s an idea which wants challenging. You will find parents who WANT pity and pity their own kids and (and disabled people too) and it’s dangerous because it leads back to a world where we are pitied for being disabled, pitied for having a disabled family member and ultimately pitied as a society that we have to put up with disabled people at all.

Whenever the idea is outside someone else’s comfort zone and it’s always folk who know nothing about your life. BUT: YOU are the expert on being a mother with a son with CP so you know whether or not you’ll manage – not them. I’m sad that as parents folk get this too but the parents who challenge it are the ones who will teach their kids to challenge it too. Not the same as ‘you can if you think you can-itis’ just that it is your life and it will be their lives and people like taht are just talking to hear themselves talk and will find something silly to say when you have a great time! All the people who suddenly thought my ‘poor’ husband must have ‘sooo much to cope with’ the minute I got married. Who said exactly the same when we planned to move away from _them_. Even though all my life they’d downplayed my CP suddenly it seemed that a man who did most of the cooking (because he’s a better cook) deserved a halo for ‘doing all the work’ and ‘putting up with me’. The fact that what I actually had was a husband who pulled his weight when we were both working didn’t cross their minds,  just as this woman hasn’t considered that taking ANY kids on holiday makes parents say, “Oh, GOD, never again” at least once!

The ‘how will you managers’ are the type who spend time with _their_ friends and family for what THEY get out of it and purely to relax and they cannot imagine the slightest effort for another person In fact they are afraid that you show them up as lazy and lacking commitment. I’ve met people who resent spending time with disabled people because they cannot pretend that life is all glitter and rainbows and because it isn’t _all_ chill time. Sometimes we do have to cancel, go home early, want to talk about Welfare reforms and most importantly we don’t think a hard life is a feud with Mrs Next Door and her overgrown hedge.  It is their own inadequacy which forces them to make YOUR life look like a big deal. Yes, life is tough sometimes but to them if it is a major effort adding a halo for having a disability or being a carer bigs up your efforts and makes their struggles look at least pretty tough and deserving of sympathy. . We deserve halos for putting up with comments like THAT, but there is some pretty messed up thinking going on if someone whilst giving you a halo makes you feel they kicked you in the teeth?
It’s the same impulse that makes them think that ‘everyone would have to do everything if you had kids’. It was always the people who hadn’t had kids themselves or were not natural parents who were the ones who told me that it would be too hard for me, never the ones who enjoyed parenting and had happy well-adjusted kids – imagine if I’d done a BETTER job than they did and thereby showed them up – so me parenting with CP _must_ be a burden for others…. The fewer people like this around your kids the more he and his sister will grow up to give them an old-fashioned look when they try it on THEM. These are the ones who say to your child’s face “Your mother must have had such a lot to cope with.” I’ve had this said to me and I’ve even had it said to me by disabled people. I’m a bit of a self-pitying type myself given how mild my CP was and that’s largely down to my mother’s negative attitudes and the people who stood around looking saintly that they had to put up with me. We could have got on with it but we were the kind of family where everything’s a drama. Expressing that THEY would feel inadequate to tasks that parents of kids with CP, means that  if your part deserves a halo their role as a ‘friend of that poor family’ will look appropriate, average and pretty good instead of the patronising rubbish it is. It is obviously an issue that parents too come up against. It’s an idea which wants challenging. You will find parents who WANT pity and pity their own kids and (and disabled people too) and it’s dangerous because it leads back to a world where we are pitied for being disabled, pitied for having a disabled family member and ultimately pitied as a society that we have to put up with disabled people at all.

I do know what people like this do to the confidence. I’ve been mulling over what they did to me with the ‘how would you manage’ a lot lately and the downside of it is that if you give in they say either, “Oh, how sad, she can’t manage, it shows how hard it must be to have disabled kids/be disabled” or they take great delight in telling you how you should be trying much harder because other families with disabled kids /disabled people manage it!”  They cannot pretend that life is all glitter and rainbows and because some parents want pity because they are part of that group that finds other people an effort and somehow became parents so that everyone will be impressed by their sacrifices to their kids and then – had a disabled child They want pity and pity their own kids and and it’s dangerous because it leads back to a world where we are pitied for being disabled, pitied for having a disabled family member and ultimately pitied as a society that we have to put up with disabled people at all.

As the person with CP whenever the idea is outside someone else’s comfort zone and it’s always folk who know nothing about your life.You are the expert on being YOU so you know whether or not YOU’ll manage – not them. I’m sad that as parents you get this too because as a disabled person I got the “stupidity guide to how brilliant disabled kids can be really considering” mixed in with times when it suited other people to say “she won’t manage” usually when they couldn’t be bothered to organise support or didn’t know it existed. It is your life and people like that are just talking to hear themselves talk and will find something inane to say rather than not be the centre of attention.

People said exactly the same when I got married, wanted to start a family and we planned to move away from _them_ . Even though they were never much help anyway suddenly it seemed that a man who did most of the cooking (because he’s a better cook) and wanted to marry me because he loved me deserved a halo for ‘doing all the work’ and ‘coping with me’. The fact that a husband who pulled his weight when we were both working should be normal didn’t cross their minds just as this woman hasn’t considered that taking ANY kids on holiday makes ANY parent say, “Oh, GOD, never again” at least once!

Some people see other people as a perpetual drain on THEIR time and can’t seem to imagine anyone else would be different! The “How will you manager” spends time with _their_ friends and family for what THEY get out of it and they cannot imagine the slightest effort for another person. In fact they are afraid that you show them up as lazy, selfish and lacking commitment. Magnifying your commitment makes them look average instead of pathetic. These people think they are hard done by that they have to get up, go to work, help others and interact with people who don’t think THEY are the centre of the universe. It’s just not so apparent until they meet a disabled person and then they have to project what a drag doing things for others is onto us! Do they do it with bad grace? You do it better and make them look bad? You must do it for medals because that’s what _they_ would want. Some resent spending time with disabled people because it isn’t _all_ chill time and their own dramas look small next to your actual struggles. Sometimes we have to cancel, go home early, want to talk about Welfare reforms and we don’t think a hard life is a feud with Mrs Next Door and her overgrown hedge or not being able to afford a second home in Umbria!

And if we’re always doing tricky stuff, what could be easier than a new tricky thing
Yes going abroad with a disability takes forward planning but people do it all the time! Sometimes you’re more tired than if you’d be if you’d stayed home – that’s a genuine issue for some folk. – and I do worry when I go camping with my DH that he gets tired but it’s no big deal for him, he likes spending time with me, just like the thought of seeing the sites with your kids thrills you. Where are you off to, by the way?  
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