Disablism

Get Ready, here it comes............
Blogging Against Disablism Day, May 1st, 2007

Waiting game

Only days to go now, and not a moment too soon. I feel as if Ive been pregnant forever, I'm sure most women do but its probably even more pertinent in my case. At the moment my husband is my carer, there is no two ways about it, he is caring for me and helping me on every personal level. I don't like it for sure but I have such acute back pain I'm truly incapacitated. I cant sit up, sit down, roll over or really move about without his assistance. Its not great I have to admit. I'm not good at just being, though I'm trying hard not to push myself too much. Im finding it hard to sit at the computer and am spending quite a lot of time lolling around bits of furniture in a semi prone position.

I'm starting to get nervous about the birth. I wanted an epidural originally, but that was met with lot of faces and sucking of teeth, no one is keen to do it and if I insisted Id have to go to Newcastle which is the last thing I want. But no one can really tell me what I'm going to feel. Some say I wont feel as much as last time, and others tactfully suggest that the whole thing is going to be just excruciating. Given my current level of pain and discomfort I'm expecting the latter. So its not much to look forward to is it? To be honest I have that horrible tummy flutter that makes me feel like I'm about to go over the top! I know this event is coming up quickly now and I hope I have the physical strength to get through it.

Words

Words have tremendous power, its not for nothing that there is the saying the word is mightier than the sword.

I was lying in bed last night not sleeping so I had the radio on listening to the Five Live discussion. You can guarantee that people with a great selection of views will be calling in at nearly midnight on almost any topic. We're all experts of course. So they were discussing the fact the Stephen Hawking described himself as 'wheelchair bound'. Was this politically correct and so on? Some people were quite upset at this description while others less so. I suppose it depends on personal circumstances and Stephen Hawking was pretty right in his description of himself there anyway. Some people rang in to say they were totally blind and still were described as visually impaired even though they had no vision at all. Impairment implying that there is some kind of residual ability.

As for my own opinion I don't mind too much what people call me, its all about how they do it and the context and meaning. I'm not keen on wheelchair bound or in a wheelchair because both of these descriptions tend to focus on the chair and not me. Many older people have real problems in the use of language and I try to be tolerant of that, as I suppose they have had so many shifts in attitude over the last 20 years a lot don't understand current thinking. So dont just think about what you say to a disabled person, but think about the context and how you are saying it.

Will I know?

With only 2 weeks to go to Labour Day, Im starting to wonder just how quickly Im going to realise the whole thing has started. Its a difficult call. The thing is everyone tells you it starts with back pain and then progressses. But Ive had really rollicking back pain for weeks now so Im not sure Im going to realise straight away. Time is not likely to be on my side though. My son was born in 5 hours and so the midwife has told me to head to the hospital asap as the second child is nearly always quicker. So if it takes me 2 hours to realise the whole thing has started then if Im not careful I could have had it before I get there!!!! Oh well just something to consider I suppose!

Not Critical-Enough Care

It seems that Northumberland is currently in the process of cutting all its critical care. Given that it only funds this level of care anyway I'm not sure how huge the savings really will be at the end of the financial year. It also seems likely to me that the knock on effect may have a greater impact than likely savings.

Hers an example. I know a lady who is 80 years old and was born with severe CP. By now she has no one left to look after her as everyone in her family has died, yet until now she has managed to live an independent life of sorts with help. So now Northumberland have decided to cut her package by an hour so that she will no longer get anyone to do her shopping for her. They argue she can get it delivered. Somehow I cant see that shes going to be going online to order from Tesco, but that's the reason behind cutting her care. I cant see how her needs could be critical enough at 70 but not now shes 80. So in the long term whats likely to happen? Despite the fact she wants to stay in her own home, she is already considering going into residential care as obviously she is going to have a huge problem in getting the basics in for the week. If she can no longer feed or clean herself because of this decision then what option does she have? Then as she only lives on her state pension, Northumberland will then end up having to pay for her residential care. So maybe I'm being really stupid but I cant see the logic of this decision at all? I guess if its happening to her, it must be happening to many others as well.

The following sums it up I think.....

For want of a nail the shoe was lost.

For want of a shoe the horse was lost.

For want of a horse the rider was lost.

For want of a rider the battle was lost.

For want of a battle the kingdom was lost.

And all for the want of a horseshoe nail.

No Benefits

The system fail and fails people over and over again, and no one it seems can come up with a way of getting the help and financial support to those who really really need it. We hear so often of people who cheat the benefits system out of thousands but the real human stories of those who live in poverty because of a contrary and arbitrary system don't sell newspapers

Recently a lady my husband has been working with called on us. She has severe arthritis and walks with the aid of sticks and a walker. You can see its not easy for her but she perseveres. We got chatting about this and that and I asked her if she was getting DLA. Oh I was knocked back for that, she said. I was absolutely incredulous! No blue badge, No DLA,, No income support, nothing. The only money she had coming in was incapacity benefit, she lives on £57 a week. Now whatever list you look at, Britain is in the top ten of the worlds richest countries, yet we cannot or wont provide the support and financial assistance for thousands of people who fall through the system every year. This lady thought that was it. Once she was turned down no one told her she could appeal or reapply. She doesnt know where to ask advice, what answers to give, what questions to ask, she didn't realise she could get help with her application. So there we have it, another person living on supermarket end of day reductions on her own. Her cat died recently and she cant afford the company of another one so she makes do in a tiny flat with 4 tv channels for company. She is only 49. Its a sad sad story and one that should make us all in British Society very very ashamed. I know I am.

Nesting

According to a baby book we were given by the midwife I should be now be 'nesting'. I think what this means is in fact, you're in a panic because you know you only have a couple of weeks left of life as you know it. You haven't finished painting the baby room or done half the jobs you need to as you've been too tired to care over the last 2 months. That's certainly true in may case.

Today I spent some hours painting the window sills.... very interesting.....dyed my hair bright red by mistake ( you can tell I'm bored) and got stuck in the bath. The consequence being I sat there for some time before knackering my shoulder getting out. Its now bloody painful and I'm regretting the whole decision to have a bath at lunch time. And no I'm not nesting OK?!

Baby countdown is now about 19 days..........!

Parenting Skills

I believe my disability has made me a better parent. Now that sounds like a huge general statement to make but I really think it has made a big difference as to how I approach the whole task of being a parent. Certainly I'm amazed at the way I see people talking to and treating their children, for me even if I wanted to do shouting, swearing, hitting and generally embarrassing them it isn't an option. There is definitely no physical option for discipline. So this means we do everything on a discussion, agreement and cooperation basis, which many people would think is impossible for a 3 year old. But I'm pleased to say it works most of the time. My son is a nice boy. He talks and makes interesting conversation. We strike up deals together. He knows that if he helps me out he gets a reward, if not then he doesn't. Im very fixed in that there is no room for negotiation, but I always carry out my promises. He gets highly praised for good behaviour but ignored for bad. He knows that if I say I will sit there all day then I really will. So tantrums don't yield him results. We always discuss what we are doing, where we are going, and why. I ask him to help me out and by including him he seems to rise to the challenge and expectation. We never have hysterics and he hasn't had the terrible twos. I cant and don't do tantrums, and neither does he.

My disability has made me so much more patient, and willing to talk, listen and negotiate. I try to ask not shout orders, I reward the positive and ignore the negative, I rarely have to punish. My word is my bond and I am utterly consistent. No really does mean No.

But I'm not perfect, I'm not the perfect mother, my son is not perfect either even if I think he is. But overall hes a good boy who has a good relationship with his parents, probably because I take more time over things because of my disability.

Dr Strangelove

My husband has that sort of dry wit and turn of phrase that makes everything seem very funny at times. He knows what to say and how to say it and I often think he should have been a professional comedian. So we were in our favourite Superstore (The one beginning with T) on Friday when he says, 'You look like Dr Strangelove you know! (Oh thanks for the compliment!)
Well this wasnt quite as weird as it sounds since I was just getting over major dental work. Having had an infection below a crown for a week, the dentist decided to drill through the crown to put antibiotic straight at the point of infection. In order to do this Id had a mouthful of anaesthetic and had lost all control and sensation in my tongue and lips. As a result everything I was trying to say came out as "THHHH, SHHHHHH, FFFFFFFF" and so on!! Wonderful, not only am I on wheels, I'm also incapable of any meaningful speech!!! This lasted about 6 hours and meant that our shopping trip was mostly punctuated by me pointing in a manner not too dissimilar to Peter Sellers at his best. The only consolations were;

• a. He made me really laugh,


• b. He had a quiet day, and


• c. The dental work seems to have done the trick.

Looking for.............?

For your amusement and mine, here are some of the searches people have done recently that have somehow bought them to this site.........

• why are the american gardens in pontypool so called?
• smiles driving northumberland
• someone hit my husband's car on purpose
• part m disabled toilet and change
• mishnah and age discrimination
• winnie the pooh albert docks
• messianic, 4am

Odd huh?

And who are these people? Again here is some info on recent visitors..........

• University Of Newcastle Upon Tyne
• Embarq Corporation
• Sheffield Hallam University
• Manchester City Council
• State Of Montana Department Of Administration
• Dept of Veteran Affairs
• Centerparcs
• Ikea Corps

Finally where is everyone? Apart from the UK and US, recent visitors from the last 4 days have come from............

• China
• Qatar
• Switzerland
• Canada
• Micronesia
• Australia
• United Arab Emirates
• Malaysia
• Macedonia
• Germany

I never fail to be amazed at how we can all touch the world if we want to.

Woe is Me!

I have a tooth infection. Poor me. Yes I feel utterly sorry for myself and totally pathetic. It is sooooooo painful and has gone into my ear. So I have enforced rest which means watching daytime TV and my brain has turned to jelly!

I dragged myself pretty literally to the dentist on Monday. She had a look and pronounced "oh you have an infection " prod prod prod ("OMG stop doing that." I thought) Wow, razor sharp there, how could I have guessed at an infection?!! I have a weeks supply of antibiotics and feel pretty grim and I left with the promise of root canal work..... can hardly wait!

R and R

You need to rest..... I need to rest?

Yes, rest that's whats needed. Why not watch all those old films you were planning to catch? said the Physio last week. You see my back and pelvis are definitely not working in harmony together, well not really working at all actually.

But I'm not a resting type of person, so its hard. What this really means is no twisting, turning, unnecessary moving, especially of my lower half, bending, lifting, and so on. Hmmmm nice. So while I'm not exactly confined to bed rest, I'm advised to sit on the sofa and relax. Bored bored bored. I keep thinking, maybe I could just manage half an hour in the garden doing something interesting, or a bit of painting or something else equally as stressful to my body? But fortunately my husband has decided every time he catches me doing something inappropriate I get told off. So how many days to go now..... about 25 or so and counting down.

WHEELchair!

My son is 3, going on 33, and manages to be endlessly funny and hopelessly earnest at the same time. At the weekend we had lunch at a lovely organic restaurant and bakery near Penrith. The weather, being the best of the year meant we sat outside, very close to where we had parked. I had somehow managed to bag the best and only disabled parking spot. After eating he got up and walked around a bit looking at the newly installed bike locks and we discussed the signs. There was one of a bike so I told him what this was. He then pottered over to the car and looked at the disabled sign. Whats that for I asked him? He looked at me and smiled. Its you Ma, with your WHEELchair!!!!!! Is it? I replied, being a bit surprised at this sudden insight from one so small, Yes came the answer, its your Wheelchair. He likes to emphasise Wheel!

Its funny because hes never used the word wheelchair before, normally he just calls it my wheels, so I suppose he must have heard someone saying something. Anyway that's me put right, now I know that he sees me as a little stick figure in a WHEELchair!!!

The Bright Side of Life

I suppose I know more than my share of disabled people these days. It wasn't always the case as you can guess,but the fickle finger of fate pushed me in a certain direction as it were, and so I find I know a zillion more people than I ever did. Come to think of it honestly, I knew one person with MS and I was always hopeless at making any kind of meaningful conversation to my total shame. Now of course I inhabit that alternate reality that is the world of the disabled and as a consequence I find I know loads of people with all kinds of disabilities. Now don't misunderstand me, but I didn't go out looking for them, I didn't just wake up one morning and think, Oh I must find some disabled friends, but I suppose its a shared experience so maybe its inevitable. The thing Ive noticed is that disabled people tend to be hopelessly cheerful in their attitudes to life. I should know as I'm one of the worst. I'm not sure about the reality of this though. Are we all cheerful naturally, or is it an act for the rest of the world? Are those of us that are out and about just the tip of a huge disabled underclass who sit at home all day being invisible to society? And one more thing, are there any disabled people out there who are for want of a better way to put it, just bloody miserable!?

I do think that your own personality tends to become magnified. I am for the most part relatively cheerful in life no matter what. The glass is always half full for me. If I feel down I'm usually quick to get over it, and as I was saying today to my husband, my main motivation and drive in life is anger. Not in an aggressive sort of way, but I get very cross about social injustices and I think this does tend to keep me going when others would give up.

So let me know if you are disabled and grumpy with it, because it seems to be that if you are going to have a disability then you have to be really cheerful all the time!!

The Final Furlong

Well the end is in sight for this pregnancy that's for sure. Only a month to go and for me that's a month too long. Really and truly I have reached a stage of incapacity I have never experienced before. Whats more its not only that I'm unable to do very much but what I can do is very uncomfortable and even painful. Right now I'm thinking of going to bed, only thinking, because I'm at the point whereby my husband pretty much has to do it for me. I cant move enough to get undressed properly, cant get myself into bed, cant turn or get out again. I am getting more and more reliant by the day, which you can guess I really really hate. Obviously I'm a bossy controlling person who likes their own way, so having him put my socks on me isn't my idea of having a say in life. He pretty much has to push me wherever we are going and I can still just about manage the house. Getting in and out of the car is horrible as I cant even get reach my legs enough to get them in in the first place. I feel unwieldy, incapacitated, ungainly and crippled. So, fingers crossed I will at least be getting what control I had back over my body next month. The last few months have seemed like an eternity and I have to admit I felt so fed up I had a bit of a cry about it all today. I mean any able bodied woman feels tired at this stage, but for me, right now I'm absolutely knackered!

Falling without Grace

I fell out of bed last night with an enormous thud! It was my fault I suppose, but I woke up in the dead of night to hear my son crying loud and hard and in my hazy sleep filled head I thought it was a good idea to jump out of bed and go and sort him out..... Of course when you are still 3/4 asleep its easy to forget that I'm very pregnant and actually cant walk either..... so I flung myself out, (how I managed it I have no idea!) and then Whoa..... !!!!...found myself on the floor sitting on my backside accompanied by a very loud bang. "My Ar*e!!!" to put it bluntly!!! Ouch Ouch, Ouch....it hurt, a lot. What is it with me and falling on my backside? Its something I started doing as a child and haven't been able to give up even as an adult. Anyway I sat there for a minute or so, son still crying, and me swearing. My husband coming too groggily, which isn't much fun at 3 am for him!! He tottered out the room and tucked up our little boy again and then came to see if I was OK. I am. Although I have to admit that today, my whole spine has felt very sore and jarred...... so Ive sat around watching trashy TV. Well I have an excuse don't I?!!

The Princess and the Pea

I cant sleep. It seems that not only am I destined not to have any sleep for months after the baby is born, but I'm preparing myself for it now. The main problem is I cannot for the life of me get comfortable no matter how I try, despite my wonderful memory foam mattress. I just lie there wondering what time it is, my talking clock kindly keeps me informed with up to the minute time checks. "It is 12 am, It is 1 am, It is 2 am, It is 3 am." I seem to manage a light doze for I suppose half an hour in between and then I wake up. Whats waking me most is my need to turn over as I'm very uncomfortable lying in one spot for too long, but I cannot spontaneously turn either at the moment. So I wake up, then take 5 minutes to grunt and groan as I attempt to shift my position. However as soon as I move my bladder wakes up and starts emitting emergency signals! So I have to heave myself up and off to the bathroom. You can imagine this takes absolutely ages, I then get back into bed eventually, doze again and repeat the whole fiasco an hour later. Consequently I'm not in the best of moods. I'm trying so hard to smile and be cheerful and tolerant and patient and all those things, but really I feel like a moody old bag, fit to verbally rip my husband to shreds. Poor thing, hes a gem really, I'm such a grump I don't know how he puts up with me, Grrrrrrrrrrrr Zzzzzzzzzz!

Pesach

Pesach is upon us, and if you arent sure this is the Jewish Passover festival. Its the time where we remember and tell the story of Moses taking the slaves and escaping from Egypt. Now normally we would go to visit one of my husbands cousins who usually puts on a huge feast and members of the family come and gather and its a good time had by all. Well sort of I suppose, although most of me is having a good time, a little bit of me knows its one of a few times in the year when I become the family curiosity. Its the time when I'm told, "but you look so well,"... "tsk tsk, cant they do anything"... you know the same old thing over and over again that just makes me squirm. Of course pregnancy offers even greater novelty value at the moment as you can imagine. So I'm hugely relieved that this year we are staying at home and doing our own thing. I'm too tired to socialise at 8 months, well that's my excuse anyway.

So that got me thinking, and you know, Ive realised its really rare to come across disabled people within the Jewish community so where are they all hiding? Just to clarify I'm referring to physical disabilities and younger people rather than the retired. Ive met one or 2 blind or deaf people over the years, but hardly ever anyone in a chair. So are they being hidden perhaps albeit unconsciously? Now the Jewish community has a great record for charitable work and looking after people, well if you live in London or Manchester anyway, but I do wonder if people are sitting in their homes unable to go to any of the Jewish places you might want to frequent. What Ive noticed is this. If you walk along say Golders Green High St and look at all the places there, nearly all of them have steps to get in, and that's just the shops and cafes. If you want to go to a religious establishment, loads of them are on upstairs floors with no lift, and amazingly should you want to go to synagogue, your chances of getting inside one are remote to say the least. As a woman its even worse for me, but that's not an argument I'm getting involved with. So I wonder if it might be better for some of the Jewish charities to actually stop providing care for people who could manage on their own most of the time, like me for instance and look at the wider issue of access in the community. There are always ways and means, and to say that synagogues cant afford to put in disabled access is pretty poor, I mean who would believe that? I suspect that the main reason it hasn't been dealt with is that it just hasn't been thought of. No one has raised the issue. Paternalism is our biggest handicap, said one of my friends, and I agree for the most part, its about time the Jewish community came up with a charity called Jewish-Do, lets go and Do for all the community not just a few.

Ok that's my sermon done for the week, I'm off to munch Matzah for 8 days, mmmmmmmm!!