19

Well it had finally got to the time when I needed help with getting about. I think the OSO realised that it was time to do something when she picked my brothers and I up from school one afternoon and I said that I had fallen over in school again. This had been happening quite a lot, usually it was in the playground when I was out playing with my friends and I got pushed over my mistake. It was just that somebody had knocked me and over I went like a Kelly doll! This time however I told Mum’ the wind had blown me over’ and trust me it was only a little breeze, not gale force 9!

So off we went to Manchester to the main M.D. centre where I was supplied with a manual (push wheelchair to those not up to speed with disability speak!) wheelchair so I could use it when I got tired. I found this a great help, but I think Mum especially found it quite hard because I suppose it meant that I was getting worse.

This worked fine for quite a while, but it got to the point when I was about 9years old that I was going to need an electric wheelchair. To be honest I was quite looking forward to getting one because I was finding it very hard to walk and especially keep up with my friends when they were playing.

We already had a van adapted to take a wheelchair and the bungalow we had already adapted the bungalow so it could take a wheelchair in that the doors had all been widened and a couple of walls knocked down to make it easier for me to get around. (I make all this sound so easy, but the alterations actually took quite a lot of time to do and a lot of money. Mum and Dad had to have help to do this from their parents)

Anyway, again I went over to Manchester to a specialist wheelchair place to sort out the right kind of wheelchair for me. I wanted a roller blade/mountain bike type of a wheelchair. The trouble was they didn’t make them like that. This was quite a long time ago and at that time wheelchairs seemed to be only designed for old people, not children like me. Things, I know, have got a lot better, but then there really wasn’t much choice. However, I did get fitted for a chair and had great fun racing it around scaring the OSO nearly to death. It was very expensive, but we got help buying it from the charity Whizz Kids who helped us out with two more chairs in future years.

I thought my chair was great and it helped me get around so much better. Out in public it caused quite a stir! Lots of people did actually talk to me as if I was stupid and would talk to the rest of my family rather than me; but that was something we soon all got used to so it didn’t bother us after a while. In fact very quickly my wheelchair was incredibly popular. My mates quickly realised if they were on their blades they could all link up with each other and if one of them held onto my wheelchair then I could pull them all along in a big sort of chain! It also meant that we could all go out walking as or biking as a family again which was fantastic. Obviously we had to pick where we went, but as long as it wasn’t too bumpy a route or had any steps we got along just fine. It turned out that we could get an electric wheelchair into all sorts of unlikely places; we couldn’t always get it out, but luckily the OSO was also known as the ‘mighty atom’ so she could usually manage to extricate it, we never had to call out the fire brigade!

18

I’ve not talked much about holidays, other than when we went to North Wales. It got that the cottage didn’t work as there were far too many stairs and I couldn’t get up them.

Instead we used to go camping to Brittany. Mum and Dad used to go there before we offspring had arrived and they decided it would be good to go back again.

We used to go to the big organised camp sites where the tents were already put up for you. We thought they were brilliant holidays. The camp sites tended to be level so it was much easier for me to get around in fact there were rarely any steps at all. I had a power assisted trike which was great. I couldn’t manage a two wheeler ‘cause I fell over all the time which rather slowed my progress so the OSO found a manufacturer who made these trikes. Basically I had to pedal, but when I got too tired, or there was a bit of a hill and I hadn’t the strength in my legs to move the bike, an electric motor kicked in and helped me along(to be honest I would have been happy with it being permanently motorised, but the OSO said it was good to keep my muscles working as long as possible. What did she know?)I was great as it meant I could go out biking with my brothers and all of my friends on the camp site. It was however, very expensive to buy and the parents had to buy a VW Caravelle van with a lift to get my trike and later my wheelchair in; but hey ho!

The trike was designed to be very stable and impossible to tip over,needless to say I managed it!

I was still able to walk a bit at this stage, but running was pretty well impossible. One time we kids got together to organise a ball game as you do. All of the parents were sitting together watching us and slotting down the old wine (what an example I ask you!). After a while they asked me what I was doing walking around with my arms in the air in between my mates who were hitting a ball to each other. We all thought it was obvious that I was the net!

 It often struck me that other children were very rarely bothered about my disability whereas adults invariably were.

Over the years there were loads of occasions where other children would come up to me and ask me about what it was like being in a wheelchair and so on only to be pulled away by their parents. Perhaps they thought what I had was catching and their precious offspring would be affected just by talking to me. On the other hand it may have been because they had seen my Mum and thought she was catching a much worse fate!

17

By this time all three of us were at the lovely primary school I told you about before.

When we first started there it was a split site school with the couple of years on one site and then up to a very old school building for the last couple of years. The school had been very keen for a long time to try and get the school onto one site, but the Local Education Authority hadn’t got the money to do it. It was realised though that I would find it very difficult to get around the building in a wheelchair. By this time I was finding it increasingly hard to walk and I had a tendency to fall over! The LEA surveyed the building and decided it would be too expensive to do the necessary alterations so they would put the school onto one site which is what the Head teacher and Governors had wanted for years. (Yes you have guessed it, the OSO was a Governor at the School by now!) So result! Every one was very happy. So the junior, the more modern bit of the School, was extended so the School was now just on one site.

The School was really good and we all enjoyed going there. As time went on I did find it more and more difficult to get around, but no one ever seemed to mind, or in fact really notice much. I had some really good friends and my increasing disability didn’t bother them, because, of course, of my devastatingly wonderful personality!

The main problem though, was the OSO, particularly at Christmas! You know how schools always like to do a show for all the parents and grandparents at Christmas? Well our school did some really fantastic shows, not just boring old nativities, but quite lavish productions which needed us to be dressed in fantastic costumes which of course all the mums made at home.

The OSO could only do shepherds!! Basically she couldn’t sew to save her life. She claimed she was allergic to needles and cotton and the very sight of them made her come out in a rash and throw up! She really was the limit. Fortunately her Mum (our Gran) was brilliant at sewing so she helped out. Mum was useless, she was the only mother who told her sons off for getting badges at cubs and scouts ‘cause it meant she would have to sew them on. When we went to Secondary school she had to sew the school badge onto out blazer pockets. We had to stand (or sit in my case because I was in a wheelchair by then) on the skew to make the badges look straight cause the OSO always sewed them on wonky.

When Roger and Alistair moved in 6^th form much later, she was supposed to sew blue ribbon all round the edges of the blazer. Some hope!!

So back to the school Christmas plays, she could only do shepherds because all she had to do was put a tea towel round our heads and send us to school in our dressing gowns. It didn’t look very good when I was supposed to be a firework one year and another year Roger was Joseph in Joseph and his Amazing Technicolor Coat. The OSO thought he was Joseph, the virgin Mary’s other half! Yes, you’ve got it, she sent him with a tea towel!

Welcome to my world!

You see lots of people thought it was really hard for me having Muscular Dystrophy. In fact it was a piece of cake compared with having the OSO as a mother!

 

16

Feedback from my last couple of blogs says that you’re fed up/impressed with my name dropping!

So; I will get on with telling you about the more mundane things that happened in my life!

You may remember that due to a rather unpleasant brother in law of our nice farmer (the OSO saw him this morning, she pulled out her tongue at him behind his back, (the brother in law, not the farmer). Whenever will she grow up and act her age?!) stopped us from building our lovely bungalow. Well anyway, by now, we had moved out of our house ‘cause I was finding the stairs really hard.

Incidentally, another funny story from that I’d forgotten about, was when the OSO had been told she could claim Disability Living Allowance for me. So she had to get a doctor to come and assess me to see if I qualified. To be honest, I don’t think any of us was too keen on going ‘cap in hand’ as my dad called it, but money is money as they say.

So this Doc arrived and watched me walk, try to run and generally get around, then he wanted to see me go up and down stairs. Actually I thought I had done quite well, when he turned to my Mum and said, very scathingly

‘Is that as fast as he can go, I’ve got another assessment to go and do?’

Some people really are unbelievable, I mean that’s why he was there, because I couldn’t go any faster!

But back to my first bit of story. So we had moved out of the house and were renting a bungalow off some friends. The plan had been to live there whilst we were building the bungalow, but of course now that was not going to happen.

However things then took a positive turn in that Mum and Dad had looked at a particular bungalow ages before in the village that was for sale but they had dismissed it as it was far too expensive. Anyway the people selling it came to see Mum and Dad to say they needed to move quickly and would drop the sale price for us! Brill!

That’s what happened, a price was agreed upon and within a very short space of time, we had moved into the bungalow, which although it would need quite a lot of things doing to it, like widening doorways etc, it was pretty much fine.

We found out quite soon however while the people were so keen to move quickly  when the bailiffs came round and tried to seize some of our furniture!

The bungalow was great, and it was still in our village. Over the years, we built an extension and other building work but we loved it so it all worked out very well and we stayed there for 15 years.

15

Mum by this time had also got back to running. She and Dad had got involved with the Muscular Dystrophy Group as I have mentioned in another blog. Dad had ended up on the National Committee and had to go down to London quite often for meetings with the boss of M.D. the President, who at that time was Richard Attenborough (yes ‘Dicky’, he used to send us Christmas cards, how good was that?) and other committee members. The OSO, who as you know was not good at sitting down decided she would raise money for the group by running marathons and getting sponsored for doing so. Over the years she ran several, including three London and one New York marathon. I remember just before she went off to do the New York marathon, she raised about £20,000 from this one alone, we as a family were invited down the the NEC for the Muscular Dystrophy Group’s ‘Commit to get Fit Campaign’ press release.

 It’s a long story which I won’t bore you with, but basically the idea was that people around the country got themselves sponsored to get fit thus raising money for Muscular Dystrophy.  Sally Gunnell (who was the 400 metre hurdle Olympic gold medalist) and Roger Black (Olympic 400 metre runner) were also there as ‘fit’ celebrities. We had been invited I think because we were a good family to involve because we did a lot with the group and we gave a positive image to the wider public about the various aspects of living with Muscular Dystrophy. We got to sit with Sally and Roger who were both really nice. The OSO and Sally never stopped talking to each other about horses would you believe!

Anyway; at this press release the Chairman stood up and told all the press about the Campaign and how it worked, it was big, it was a national campaign so the group were hoping to raise lots of money from it. Then Sally Gunnell stood up and talked about how keen she was to support the Campaign and then Mum was invited to stand up and say how important it was to raise money to help families and raise money for research.

I could have told them that was not a good idea, give the OSO a stage and she’s off!! To be fair she started well and said all the right things, but then she went onto say that she wanted to show that families didn’t just receive money from others, but also raised money themselves to help the Group. ‘ Indeed’ she said she was just going off to run the New York marathon, THEN she said she had considered asking Sally Gunnell and Roger Black to go with her, but she was afraid that they wouldn’t be able to cope with the distance as Roger only ran 400 metres round a track and he was exhausted; and Sally, granted she jumped a few little hurdles on the way round the 400 metre track, but the  she too collapsed, so the OSO was worried that they wouldn’t be able to keep up with her! I ask you!

To be fair, it did raise a great laugh from the press audience and Sally and Roger seemed to take it very well. (it’s funny, but it never clicked until I wrote this blog that it’s strange that Sally Gunnell and Roger Black have the same names as one of my bros and my Mum) Well there you go.

Still the evening went well and the OSO did do the marathon and raise loads of money and she and Sally kept in contact for quite a while after that. So in the end, it all went very well and it did keep the OSO out of our hair for a while whilst she was in America!

14

I’ll come back to the housing thing in another blog, as you might imagine, there’s more to the story!

Meanwhile, Mum and Dad had got quite involved with the Muscular Dystrophy Group, which is a charitable organisation which funds research into all types of Muscular Dystrophy and supports the families affected by it. By this time they had found out that the closest specialist hospital was in Manchester, so we went there to get more help and information.

I was given exercises to do which were supposed to help me stay mobile, keep my muscles stretched, but mainly I think to keep the OSO thinking she was doing something to help! These exercises were pretty boring and I couldn’t see much point in doing them and in all honesty, I was too young to really take on board why it was important to do them.

The OSO then decided she was going to try and help make it easier for boys such as me to do these boring exercises; yes, you’ve guessed it! ( If you have been reading my previous blogs you will know by now that Mum was going to spring into action.) So she decided it would be a good idea to make a ‘fun’ video incorporating the exercises which would encourage boys to do them. So she spoke to our old friend Bernie Clifton to see if he and his Ostrich would help, of course he said yes.

Mum then talked to a couple of her work colleagues who were lecturers in the drama department.  She also set a meeting with lots of physiotherapists who worked with MD boys such as me to make sure they all agreed on the exercises (that took a bit of time I’m sure!)A script was then written which included Joey the clown and Bernie and Oswald the Ostrich. The video was to be called; wait for it, ‘Oswald’s Antics’ catchy title or what!

Joey was one of the drama students at the college and he was filmed with a story line doing the exercises with Oswald in a fun kind of way and to be fair it was pretty good.

The video was then made properly and voice overs and credits and all that kind of thing that the filmy, dramery people do and it was then sent round the country for MD boys to use.

It was a great success and proved to be very popular.

It sounds, in the telling, that this all happened very quickly, but as you may imagine, it took absolutely ages to sort out and plan and prepare, but it had the huge advantage of giving the OSO something positive to do for a while!!

Everyone was great about doing this and giving their time for free.

 

Bernie at the time was in a children’s television programme at the BBC called ‘Tricky Business’.

 Mum had an idea about making a children’s programme like a sort of Blue Peter that had people in it with disabilities. At that time, disability was still rather shoved into the background and people such as me were never seen on the tv as being ‘normal’. If you know what I mean?

Anyway, Bernie thought this was a great idea, so he fixed up a meeting with one of the top children’s tv producers at the BBC for him, Mum and the lecturer from college who had help make the ‘Oswald’s Antics’ video. (it does help when you have friends in high places!)

The OSO had a great day out in London at the Beeb! She was dead excited ‘cause when they went into the canteen for lunch with Bernie she sat at the next table to Dawn French and Jennifer Saunders! Bless!

The upshot was, that the producer really liked the idea of the programme, BUT thought that the viewing public were not yet ready to see people with disabilities in their front rooms on their tvs! Ah well, it was such a good idea, but a bit ahead of it’s time; ‘cause as you know, now there are loads of disabled people on and presenting tv programmes all the time.

At the time, the OSO was disappointed, but yes, you guessed it, she soon moved onto what she could do next!

13

We got back from holiday, and in the September I started at the great primary school where we were all to go. I really enjoyed it, it actually was great to be able to get away from my brothers and mother for a few hours a day, school was far less hectic than being at home.

The OSO carried on with trying to sort out getting planning permission for us to build a bungalow in a bit of the field which the farmer had kindly agreed to let us build on. Mum and Dad had to submit rough plans though nothing in detail at that moment in time they were just trying to get outline planning permission from the Local Authority. Once these plans had been submitted the Planning bods came out to have a look at the site to see if it was suitable. Sadly, they decided it was not a good place to build because of the access onto a bad bend in a busy road. So that was it! We wouldn’t be allowed to build there.

However, the farmer went away and did some thinking, he really was keen to help us, and came up with another plot of land he was prepared to sell us which was actually a better place, more accessible and The Local Authority planners gave us the thumbs up unofficially that we would be more likely to get planning permission. Into action went the OSO.

The first step was to agree a price with the farmer for the price of the plot if we did get planning permission to build. Mum’s father (my Granddad I called him Pompa) was a retired solicitor so felt it was best to agree a price at that stage because if planning permission was granted then the plot would potentially worth a lot more. Hope you followed that, anyway this was easily sorted out. The plot of land was actually designated as Green Belt, but was right next door to a line of bungalows so Mum and Dad went round to other people in other Counties in England who had been given permission to build a bungalow for someone who had disabilities. They had lots of meetings with their local councillor who was on the planning committee (he was really nice and helpful) and also met with other people (I’m not sure who to be honest, but they were always out and about trying to sort things out).

Eventually they got an architect to draw up some plans for a fantastic bungalow that would be able to meet all my needs as my disability got worse as well as being a great home for all of us and let us stay in the village where we lived.

All this took about a year I think, can’t remember exactly, but it was a long time ago! At last it was at a stage where Mum and Dad could put together the formal application to put to the Council to see if we could get planning permission to build. We had been informed that we had a very good chance of it all going through. I don’t know if you know how it works; but once an application has gone in then other people can see it and point out any objections they might have to the proposed build. We had some responses. One household said they didn’t want someone living near them who was in a wheelchair because that would ‘de-value their property’!

Another stated that they thought ‘people in wheelchairs shouldn’t live in the countryside, but should live in towns where there were better facilities’!

I know, you wouldn’t believe how people could say that would you?! I mean, most sensible people would realise that having me living near them could only increase the value of their property!

So time went on, but eventually we got to the weekend before the Planning Committee were due to decide on the Monday if we would get planning permission. The farmer came round to our house that weekend to say he was very sorry but he was now not in a position to let us build on his land! Apparently (unbeknown to us) that bit of land was jointly owned by him and his brother in law who had decided he didn’t want us to build there after all! Why he had only just decided that after nearly a year and a huge amount of time and money that Mum and Dad had put into the project was a mystery to us. The poor farmer was really upset, he had tried really hard to try and get his brother in law to change his mind, but to no avail. Mum went round to try and persuade him to let us build, or at the very least, explain why he had made this decision literally at the last moment. He was having non of it, so at the last hurdle we were let down all that time, energy, money and help from lots of lovely people all down the drain because of one person!

As you can imagine the OSO and Dad were very upset and angry, but there was nothing they could do, but accept they wouldn’t be able to build a bungalow that would have been great for us. It was a blow, but the OSO was already thinking of what else they would be able to do next!!