the arrogance of "healthy" people

This morning I rang up to book my tickets for Nickelback on Jan 19th. All was fine until she told me the price was full price for 2 people when we've always only paid for one disabled ticket cuz my husband (or whoever might go with me) is needed to push the chair and assist with whatever else, getting drinks, carrying a bag, whatever. As nicely as possible I asked since when does my partner not go free? You wd have thought I'd asked her to kill her own mother!!! She was practically shouting at me about how they can't assume anything, some people have independent wheelchairs, you said you wd be coming with your husband - your husband isn't necessarily your carer, a lot of disabled people will get offended if we assume they can't cope by themselves, we can arrange for someone to push you within the arena if that's all you need.....I'll tell you what I did get offended by - her getting so angry at me as if this was all about my attitude to her! It sadly shows, as with parking bays and blue badges and many many other disabled facilities, that the decisions made about the facilities are not made by the people who actually use the facilities, they are made by people who are in no position to remotely understand our needs. She actually said that when I said I was going with my husband she cd not automatically assume that he was my full time carer. No but by the same token I shdn't have to justify whether he is or not, for the purposes of going to this concert he is acting in the capacity of my carer and they shd not have to know that. It proves in my mind that most people making these decisions have no clue what being a carer actually means. They obviously have an image of you requiring to be fed or attended to every minute and anything short of that means you don't really need "a carer" at all. I find it completely ludicrous that they say they can arrange for someone to push you to your set within the arena...right so I logically need someone to push the chair to get me to the arena but it's okay they can just push me to the door and then leave? Obviously whoever assists me to get there is going to come with me to the show. And someone can just push me to my seat and then what? What if I need a drink or something to eat, what if I need the loo, what if there's some kind of emergency...they don't think these things through. We have had that once before where they insisted on "being helpful" and having their own people push my chair - we had to wait about 15 minutes for someone to come and they disappeared the second they had deposited me where I wanted to be. If this was in a huge arena and I was on my own it's really a completely unworkable situation. I wd have liked to try and explain that actually I've never been asked to justify the carer ticket before but tbh I cdn't get a word in edgewise. I did try to say actually I've never been asked before but that just set her off again implying it was my fault for saying it was my husband going with me. Really? Every other time we've booked tickets anywhere they have just said the price for one ticket and no more was said about it. I am sick of this attitude in this country these days that situations that have existed for centuries suddenly are a problem because one person in a million MIGHT be offended. Why oh why can they not ask us actual disabled people what WE need. I find it offensive that they are telling me what I need and then going off on one because I'm suggesting that they've got it wrong. It's the assumption that the only reason you need assistance is to move the wheelchair, they don't understand there is so much more to being a carer.

The best place we've had for this was Milton Keynes. Bon Jovi and Nickelback that shd have opened Wembley but it wasn't ready. MK is a huge outdoor arena, it was a beautiful hot summer night and tho I'd have rather been at Wembley it was a nice place. We basically were allowed the "backstage" entrance thru some car parking and separate from the difficulties of the main crowd. As at O2, the disabled area was just a large platform which made it really easy to get the chair around and get comfortable. At Wembley it's literally a fixed seat with a limited space beside it. At MK there were surprisingly few security people whereas at O2 and Wembley they hover and I feel under suspicion the whole time. If I do stand up, they watch me to see if I can actually walk so I must be pulling a fast one being in the disabled section. I really felt completely normal and comfortable at MK, just left alone to enjoy the show. Maybe the problem is London, other cities might be a bit more relaxed.

not a good start to the day but there we are. I have my tickets that's all that matters!!!! Can't wait. Right, rant over, coffee calling, legs hurting, child fed, feeling a bit like I've done a day's worth of crap already and it's only lunchtime.

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I am so lucky I have not had a day like this for so long but the feeling of complete hopelessness has unfortunately taken over today. I don't know where to start...swine flu maybe. I have now had this awful chest infection (which makes it sound so simple) for over a week. Every day I wake up thinking I am going to feel better today but no such luck. I pulled a muscle in my back four days ago which is only just beginning to not hurt. It felt like I had been shot and stabbed and cracked a rib all at the same time. I have rarely felt pain like that in my life.

Michael is much much better today, downstairs playing his games and looking brighter than he has for weeks. I actually got him to explain a little about his friends at school. My brother rang today talking about bringing his son down to see Michael and he's saying things like oh well they can go into town or they can go other places as if it was completely normal and I expressed to M how difficult it was for me to explain to people like my brother that he doesn't do this sort of thing. Yes he can get on the bus and go into town now but he has no interest in wandering round the shops or any other pointless filling time exercise whereas his son does that all the time. Anyway it was very interesting that he said about how the kids he's friendly with at school are just the same, they don't go out, they don't go to pubs etc either and one has family problems that keep him at home a lot. I suggested about them coming here or vice versa and that apparently doesn't happen either but he seems ok with just talking to them all on messenger etc. I feel a little sad that I can't do much to help the situation but I do wish his father and certain other people had some understanding that there is nothing wrong with being the way he is. He actually said that's why he'd rather sleep in the day and be up at night cuz then he can talk to all these kids in Canada about games and figures and the stuff that is important to him and not have to feel guilty about not being "normal". Thankfully he gets that I get it but he does understand that I'm stuck in the middle having to listen to people like his father and grandma moaning about what he SHD be doing instead. Well in my book he shd be doing whatever makes him happy and if pub crawls and window shopping don't do it for him, I don't see why he shd have to do it just to make everybody else happy. Isn't it sad that even his own father doesn't understand him?

Life with an autistic son

My lovely autistic son Michael is about to turn 18. We were discussing this with him last night as grandma was saying how she wanted to give him "something that wd last" not just another action figure or whatever. This shows a) that she is from a different generation who have a different perspective on the value of certain things and b) that she does not grasp this child one iota! Apparently she meant something like a stereo system which is what she bought his father when he was 18. Of course these days, an iphone wd be far more relevant but that fact aside, Michael does not listen to music and has no requirement for a stereo (he has of course a computer, an ipod, etc). It also shows that she has no understanding of the value of the figures he collects, in his opinion they do last as he still has every last one he has ever bought (thankfully we have a big house!). He cd still produce every birthday present she has ever given him if pushed, they're all there somewhere. Grandma has no idea of modern society and what any kid today really wants let alone my son. She also has the same problem as her son, they can only do what they think you want rather than listening and learning what you actually do want. Anyway I'm sure she'll be very offended and upset that Michael doesn't want what she wants to give him and he finds it offensive that her attitude towards his figures is so scathing when they matter so much to him.

We then endeavoured to explain to him why his 18th birthday is so important. You can drink (he has no interest), you are legally entitled to do things like vote and do independent things like get your own flat (chance wd be a fine thing), be legally responsible for yourself (no concept of that and frankly terrifies him)...his response was that he didn't really understand birthdays anyway, it's just celebrating the fact that you haven't died for another year! He also suggested that he cd show grandma that he was buying a game that has an 18+ rating, wd that do (which was mildly sarcastic as he's been able to do that for years anyway cuz he's so big noone's ever asked)? I don't know who's missing the point more...

Please tell me I'm not alone in this insanity? Please tell me other people have strange children with different views and that there is someone else out there with a kid like this!!!!! Tbh I can't fault his logic, but grandma doesn't understand and his father constantly has this bizarre attitude that "well he shdn't be like that"...well maybe he shdn't but he is, what am I supposed to do about it? His father never has learnt to approach the child from the child's point of view not his. At least nowadays he accepts that if we want the child to do something, I have to do the asking cuz I know how to deal with him. Yes well, most people don't respond to being barked at! Obviously his 18th is of far more importance to us than it is to Michael himself. His father's disappointed that he can't take him out for his first pint (I'm thrilled I don't have to worry about him binge drinking and all the other awful things that happen these days) and grandma's disappointed cuz she can't buy him something that is important to her but means nothing to the child. My opinion of course is apparently of no relevance to anyone. God I love my life.

following along with this total lack of understanding, thanks to my friend Nessie for finding this...
http://www.facebook.com/note.php?note_id=137094266829&id=766393109&ref=mf

what goes on in the mind of someone like him?

what goes on in the mind of someone like him? I know his father was diagnosed schizophrenic but I don't know if that's it with him but he's sure as hell got something ridiculous going on in there. I have no patience anymore. You'd think after twenty years of this crap I'd either have got used to it or left but hey life's just not that simple. Maybe it's the fact that I now have my own money in the bank and don't feel so dependant on him that I can step back and deal with it all a bit better. This morning yet another series of examples (oh no not just one!). My friend from Montreal's wife is here visiting family and she brought her brother over the other night for dinner. A perfect example of what he's like, he just didn't shut up and I cd barely get a word in edgewise to find out anything about her brother or have the chat we girls wanted to about my friend and what he's been up to for the 30 years we were apart! So when she called this morning he unfortunately picked up the other phone. She had meant it to be a quick call to say she'll be back from Spain on Friday and we cd get together just the two of us and have a natter. However it turned into a lot longer phone call cuz he kept butting in, talking very loudly and repeating himself and doing everything he's spent 20 years screaming at me for doing! After the call, I pointed out that he was going on and on, and suddenly it's him trying to shout me down about how she had said she wanted to go and I asked her one another question. True but that was five minutes after she said she had to go because he had just kept talking and talking and my one last question was relevant to us getting together which got quickly answered and then the call ended. He seems to have conveniently forgotten the five minutes in between where he did all the talking!!! Then a few minutes ago another winning example. F1 qualifiers had finished so he just gets up and walks out of the room leaving the tv remote on the other side of the room. Sounds stupid I know but ten minutes later he comes back in having left the tv on horse racing (snooze), and announces he's going out to do things and starts to walk out again. I very quietly pointed out that the least he cd do is hand me the controls and not have left it on bloody horse racing and he's suddenly shouting at me that I should chill out, nobody died (which he seems to think is such a clever thing to say) as if I had tried to chop his arm off or something. I pointed out that I had not raised my voice in the slightest, that I merely requested that if he wasn't going to be watching it the least he cd have done was hand me the remote and he just proceeded to shout on for five minutes about everything I do to him. The world is about him of course, silly me for ever trying to point out how something he may have done affects me. Eventually he had to actually concede that I had a point, that it wd have been nice if he hadn't just walked away like nobody else existed when even when he's not there I always make a point of leaving the remotes where he can find them. Little things but I just thought it was selfish of him to just not think. The saddest part is he never cd actually just say sorry. Normal people this wd just be a two minute conversation; cd you at least give me the remote, (sarcastic tone) good grief leaving it on horse racing of all things (smile) - oh sorry yes (and passes me the remote). Over in two seconds, no-one upset. Instead a simple remark turns into a ten minute personal attack on me and not the slightest idea in his mind that he has ever done anything that might upset me for any reason cuz apparently he's perfect. I'm sick of it!!!!!! (Yes I cd have just got up and got it but 1) it's not that easy for me to get up especially on a day like this when my legs entirely ache and 2) that's not the point, he left it where he was sitting rather than considering the other person in the room). 20 years I've put up with him saying things like no wonder everybody hates you cuz you talk so much and cuz you say things like that (of course everyone in the world can be as offensive as they like to me but if I express an opinion, I'm aggressive and disgusting and have no right to be alive). The interesting thing is that recently we got to be around people who didn't consider him to be the centre of the universe, these were people who weren't really that interested in him, who wanted to talk to ME, hear what I had to say. This is a rare experience to be around people who noticeably found it a bit hard to take him talking so much, who didn't necessarily find everything he said so amusing as he thinks he is, people who actually noticed how he puts me down, interrupts me, talks over me, argues with everything I say, makes a big thing about how wrong I am and then promptly repeats almost word for word what I just said but when I said it it was wrong. He has been surrounded by the same "friends" for the last 30 years and he doesn't understand that people inside that group just accept him (and most of them behave the same way in truth) but people outside that circle don't necessarily see him quite the same way. His best friend for example will ask you a question and then when you start to answer he'll literally turn round and talk to someone else like you don't exist. Yet in Michael's opinion, I am the only one who interrupts him and cuts him off!!! Funny how he doesn't notice when someone else does it or especially when he does it to me, it's not wrong! It's like Nixon, he's never done anything illegal cuz when the President does something, it's NOT illegal. Hey ho he's gone out now so I have peace and I intend to do nothing and I'm not going to feel quilty about it either.

Windows 7

oooh I'm in love with Windows 7! I thought Vista looked nice but I hated virtually .everything about how it worked but Microsoft seem to have listened at last and so far I have not had a thing that doesn't install properly and run faultlessly. Talk about tempting fate but so far so good. This is now being typed on the blogger sidebar gadget which never worked with vista. Fingers crossed it will continue.

Here I sit in JFK awaiting flight home. Times like these I think how do people live with themselves? There's a kid with his dvd player and no headphones!!! The father is sitting right beside him but obviously has zero awareness of being in a public space and zero concern for any other human beings. The kid's player is at a volume unnecessary considering he's right on top of it and the only thing that seems to have put a stop to his incredibly annoying behaviour is lack of power!!!! Yay hopefully his battery will run out soon and we don't all have to put up with this continual tinny noise. Everybody else has the good grace to put headphones on and not inflict their soundtrack on everybody else. Nowadays tho you don't dare say anything cuz you never know wot they'll do in response. Oh well the announcements drown it out momentarily. I'll go back to my twittering and try to ignore it.

Children having children!

I've just been watching a chat show discussing the case of this 15yr old having a baby with a 13yr old dad! Where do I start?!?!?!

In my day (sound of creaking bones) the entire concept of allowing a 15yr old to have a child was inconceivable. OK you're stupid or careless enough to get pregnant, why wd you ruin your life and the life of this child by going through with it? I fully accept there are religious considerations for some people and I respect that choice. I personally have no religious leanings whatsoever but my parents wd never have allowed me to screw up my life like this. It's all very rosy for now (let's face it, who can resist a newborn baby?) but in 2 yrs time that "child" which she still is at 15 will have had more than enough when her friends are out clubbing and she can't afford a babysitter. Or no I'll alter that slightly, it's not her life that's screwed it's her mother's! Grandma will be doing everything by then. Forgive me for assuming and there is the remotest chance I cd be wrong but I doubt it.

The discussion came up about the value of prosecuting the 13 yr old father. Phrases like "waste of police time" and "what wd charging him teach him?" or "it's too late now, they've got the baby"....but it's the law!!!! "Waste of police time" - really? There's soooo much wrong with that I won't waste my time. "What wd charging him teach him (or others?)?" - for one thing, it wd hopefully serve to remind him and other teenage boys that it is against the law. Sorry, I forgot the law means nothing, morality means nothing, age means nothing (even the concept of a 13 yr old actually having sex bothers me), there is no sense of responsibility or consequences. Maybe a reminder in the form of an actual followed through prosecution may teach other kids there are consequences for such cavalier behaviour. And "it's too late now", but grandma's going to be doing all the work, so what if the father isn't there for the baby for a few months. At 13 how much can he be there anyway?

Which leads me to what prompted this rant, ok ooooh can't prosecute the poor kids, they've got enough to deal with now they've got this baby....so who does pay? PROSECUTE THE PARENTS!!!! Isn't it obvious? If the mother hasn't taught her daughter to keep her legs together and have some self-respect then the mother is the person who needs to be taught responsibility!!! What was she doing allowing these kids to have sleepovers, cd she really be that stupid! When I was that age actually ONCE we were given that opportunity. However we were painfully aware that my friend's parents were immediately downstairs and cd very likely hear everything that was going on and who frequently poked their heads up to see what was going on. We KNEW they were keeping an eye on us so we did nothing. What I remember was the boys trying hard to impress by scaring the girls with spooky stories and how cool we thought we were for being allowed to "sleep" in the same room as boys but nothing was going to happen, tho it was stunning how much mess and noise we cd make! We were kids behaving like kids at 13 but at the same time being credited with a certain amount of responsibility to behave like the adults we wd soon be. True, 2 yrs later wd have been a different story but at 13 we were still kids. Has this mother taught her daughter nothing about sex and the problems associated? With the availability of so many forms of contraception nowadays how cd this possibly happen and why is the natural solution to actually go thru with having it?! Abortion is not a pleasant thing but god it's a helluva lot easier to get over than having a child for the next 18 yrs!!!!!! Prosecute the mother and send a message to others. And prosecute the boy's father who surely must share in the blame for not teaching his son to respect women, to not treat sex as a recreational activity, to understand that sex is something that belongs only in a committed relationship and that having sex with your female friend next door does not constitute a relationship!

Whew that's quite worn me out for the day. Feels better tho. Better than screaming at the telly!

quick update: discovered twitter especially Stephen Fry, trying to catchup with other blogs, living on facebook, where wd we be without all this wonderful technology!!!!, arranging meeting up with friends I haven't seen in 30 years and possibly meeting another Farndell on the same trip...sounds like I actually have a life doesn't it? Enjoyed our snow yesterday, poor old snowman is wilting a fair bit today but by the sounds of it we shd be able to repair him by the weekend.