02May08 - Disabilism

Disabilism n. Discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others. (You will not find this word in any dictionary)

Disabilism unfortunately is a fact of life for Lucy and people like her. We have seen this first hand time and time again in our every day lives. Lucy will have to face this for as long as she lives and we will have to protect her from it as much as we can. The sad fact is that disabilism has such a firm foundation in our society that without real effort from the authorities and a commitment to effective education, it will always exist. Few outside the experience of living with disability have any real appreciation of why disability exists or how difficult the lives of disabled people can be made by the thoughtless, uneducated views of the able bodied. Throw away comments made for laughs can have a profound affect on those they target and cause needless upset. Unfortunately it is true that disabilism is not only inherent in the adult population but is displayed by all ages including those young enough to be excused for knowing no better. However if young children are displaying the characteristics of disabilism the questions must be asked, "What is missing in their education?" and "Where do they get their opinions from?". It is also true that without proper education the young carry their prejudices into adulthood and the cycle of disabilism continues.

Once again disabilism has affected our lives this week. The saddest fact is that Joshua was the target and for the first time had to deal with this prejudice that up until now we have been able to protect him from. Joshua came home from school on Tuesday feeling very low. There had been some trouble in the playground involving himself and some other boys. He had been pushed and one of the boys had said something to him. When Joshua asked why, the reply was, "Because your sister is a spaz!" Joshua has only ever treated Lucy with love and care. He is very proud of his little sister and shows her off just like any sibling would. He was understandably upset and when retelling what had been said would not even say "that word" while Lucy was in earshot. This careless comment affected us all deeply and although we are not unrealistic and know what school playgrounds are like, for Joshua to be confronted by this at his age by boys of his age is extremely upsetting. Joshua asked us not to do anything about it because he did not want to create more trouble at school. We agreed that we would treat it as a "one-off" and not mention it to his teacher. We would have left it at that but the next day he left school under the same cloud. It was clear that the previous day's event had not been an isolated incident. The taunting had continued in the playground on Thursday both verbally and with those horrible hand gestures imitating spastic movements. The boys involved were doing this saying to Joshua, "This is your sister". It is utterly shocking knowing how helpless and lonely Joshua must have felt. It makes me so sad knowing that these boys don't understand the negative impact their actions have had on our lives this week. I don't believe they can even understand what they have said and done. I don't blame them, I blame society and I blame the lack of disability awareness education that allows such prejudices to grow and fester in the minds of young children. In ten or twenty years time these children will be responsible for making policy decisions and supporting the disabled community. If we are going to change attitudes then we must start with the young. We could not allow Joshua to deal with this on his own so we did see the Headmaster of the school who was horrified by what we told him. Hopefully he will be able to reappraise the attitude in the school towards disability awareness and protect Joshua and children like him in the future from the mindless taunts of the misinformed.

19Apr08 - Room to Breath

It is about 6 weeks since we began to realise the benefits of receiving direct payments. We have been really lucky to find Helen who we can completely trust to look after Lucy and although the direct payments only provide 5 hours care per week, it is making a huge difference. We know now that we are regularly going to get time to do our own thing and to have a break from the usual routine. I think it is already having an affect on our attitudes and outlook as we are being allowed to relax. It is good that we can be flexible in the way we use the hours and we have Helen to thank for that. Some weeks Helen has done two evenings to cover bath and supper and other times we have used all the hours at once so that we can get out and spend time alone with Joshua.

On Saturday Helen took Lucy out for the whole afternoon which gave us the opportunity to have a day out with Joshua. Joshua found a place nearby on the internet called Diggerland (www.diggerland.com). As the name suggests it's theme is diggers and construction equipment, a real boy place.Joshua had the time of his life and really got his moneys worth. We would simply not have been able to do this in the same way if it was not for our direct payments and Helen. In the past everything would have been arranged around Lucy's timetable of feeding and Joshua would have had to accept that we would be stopping at regular intervals to sort her out.As it is now we have the time to give him our full attention and let him know that he is still very important. We have probably lost sight of that recently and have allowed ourselves to think that he copes very well and in reality this is not always the case. I asked Joshua to write a little bit about his day on Saturday and this is what he wrote:

"This morning we were looking for something to do when Helen/Mary took Lucy to Leeds. So I had a look on my computer for something to do, and I found a place called Diggerland, in Castleford. Helen arrived and we set off. Once we had arrived we took off around Diggerland. Even though it didn’t look much at first we ended up having a great time at Diggerland. It was really nice to have some quality time with my parents as I don’t usually have time with my mum and dad when Lucy is around, I sometimes feel as though I’m fading into the background and Lucy is standing out more, because I usually have to go and do my own thing whilst Lucy gets all the attention."

I asked him to be honest and I am glad he was. It is a constant balancing act and so difficult at times to get right. Joshua rarely shows his feelings but we know that he is a thinker. He carries a lot around in that young head of his and he shouldn't have to. I am just so pleased and relieved that we have the opportunity to concentrate on him more so that he doesn't feel excluded or sidelined because of Lucy.This is face that we need to ensure doesn't change.

29Nov07 - The Badge

Following the many requests for pictures of "The Badge", this blog is for Joshua, the 2007/2008 Head Boy of St.Saviours Junior School. Lucy could not have a better big brother, she absolutely dotes on Joshua and just loves it when he plays with her. I am so pleased that Joshua has been made to feel special in this way, especially as the whole school voted.

Congratulations Joshua (Head Boy), you do deserve this!

These are just some of the comments and messages for Joshua:

"Well done Josh!"

"Well done Josh - you are a star !!!"

"Congratulations to Josh....what a feather in his cap and well deserved I am sure. From what you write he sounds a most extraordinarily responsible and thoughtful boy for his age."

"Well done on being selected Head Boy at your School. You are obviously a popular and respected boy.
Your Great Uncle thinks you are a star.
Well Done!!"

"Congratulations Josh!!!Well done on being head boy, I hope you have lots of fun in year 6 because it's a really good year before high school!"

"Well done Josh. Head Boy my my what an achievement. Feel Proud, feel very Proud. You deserve it."

Too often at home Joshua is left on his own or simply neglected but he never complains or blames Lucy. In fact he always manages to put a positive spin on everything. He has always accepted Lucy unconditionally and it is clear that he loves his little sister very much.Lucy told me tonight that she thinks her big brother is brilliant and she is so proud of him.

27Nov07 - Grandparents

I had to leave early this morning to catch the train to London so my parents were on hand to take over and sort out Joshua and Lucy. They are so good at just stepping in whenever we need them. They have heard a lot about Lucy's school but it was the first time that they had actually been inside. I told them the routine and made sure that they knew to wait until 9:00 to take Lucy in. Their first impressions were the same as mine, what a fantastic, friendly place. They were welcomed by an "extremely nice man" at the door who greeted Lucy by name and ushered them into the school. They thought he was one of the bus drivers but when they described him to me there was only one person it could have been, Richard the headmaster. I think Fairfield School must be the only school where the headmaster of the school walks around with a beaming smile on his face welcoming the children into school. When they got to Lucy's classroom they were welcomed by Jane, Lucy's teacher ("Isn't she nice" they said) and got to meet some of Lucy's classmates. They were really taken with one little boy who toddled in with his walking frame and actually said hello to them. Jane offered to show them round the school tomorrow if they go in a little early which is so nice. Nothing is too much effort at Fairfields. I am glad that they have had the opportunity to see where Lucy spends so much time and experience the brilliant atmosphere that Fairfields provides.

I didn't arrive home until about 20:00 and Lucy was already falling asleep. There was a hot meal waiting for me which was so nice and I decided that it was too late to start Lucy's exercises, so today she and I have had a day off. It is a shame because I am really keen to keep up with the therapy every day, even if there is not enough time to fit in the whole program. Today I guess it just didn't work out, but then if we start to treat it like too much of a regime it will become a burden. Sometimes there are just not enough hours in the day and I am not going to feel guilty about that. I do feel like I have missed a day but work had to come first unfortunately. Joshua still had his school uniform on when I got home and I quickly realised why. At school this morning he had been presented with his Head Boy badge in front of the whole school. At the end of last term he was voted Head boy by the all children at the school. I am so proud of him and he could not be more pleased or proud of himself than he was tonight. He deserves it and it is so nice that he can now feel a little bit special for the rest of the school year. It was a long day away from home but at least I didn't miss seeing Joshua and Lucy before they went to bed. I am just thankful that my parents were around to do what they do best.

22Oct07 - Forbidden Corner

Today is about Joshua time. Joshua is on holiday this week for half term and I have taken a few days holiday to spend at home. Lucy was at nursery all day so it was just the three of us. We went to "The Forbidden Corner" which is near Middleham in North Yorkshire. It is a kind of mystery garden and you have to find all sorts of different clues by finding you way through mazes, secret paths and underground passages. We have all been before and all love it. I asked Josh to write about what he liked about today and this is what he wrote,

"The best thing about today was spending time with my Mum and Dad, and when I was scared in the underground bit my Mum and Dad gave me a big cuddle. On the wet parts where you can get squirted with water from different objects, I always made them go first so that I never got wet.
Even though I like Lucy being around I really like it when its just my Mum and Dad because we can do what ever we want like go down steps and stuff and don't have to worry about feeding her"

Joshua has always been the most caring brother Lucy could wish for but I am glad that he is as honest as he is. It just shows that we must make more of an effort to make special time just for him. Walking around with Joshua today was like taking a step back in time. Everthing just seemed so easy and we were able to just relax and enjoy ourselves, with no prying eyes, inquisitive looks or strict timetables. It is sad that we have to feel this way but it is certainly one place that we will never be able to take Lucy because of the access difficulties. The cruel irony is that the steep winding steps, tunnels, stepping stones and narrow paths that children love about the place, are the very things that exclude children like Lucy.