23May08 - Why & How

Why does this not get any easier? There are so many unanswered questions! I have been reluctant to write down my thoughts recently because I have felt that I would just be covering old ground but if that is the case then why is it in the forefront of my mind? I have just had the most unpleasant experience. For those that have been following the blog you will remember a post where I wrote about an incident in my local pub where the word "Spaca" had been used. Tonight the same individual approached me with what he thought was an apology. He maintains that he was unaware of my "situation" and did not "mean anything" by it. Well that's great but what exactly did he mean? I said that I was not offended by what he said because I know that it was not personal but asked him if he thought that using the word was acceptable. Unfortunately I heard what I expected. "its just a normal term"..."no offense but its just a general term". I cannot accept that!!!! Do people really think that disabled people are a valid target for verbal abuse and ridicule? What possible phrase or sentence which includes the word Spaca could be accepted in a positive light? The word "Spaca' is only ever used in a derogatory way. I could not accept this veiled apology, certainly not on the basis that he did not mean to offend but it is ok to use an offensive general term. Why don't we all agree that words like retard, joey, and spaca etc are not acceptable terms for every day language? Why is it so hard? Why do people judge the disabled? For pity's sake these people have not chosen to be like they are! They have had no choice! They have endured more suffering than any normal person! It makes me so angry that I know I can't change it. One thing is for sure and that is I will never accept that insulting the disabled is ever acceptable in any form. What those people who do think it normal to use those phrases and sayings don't realise is, is how much their words and actions affect the people they are targeted at. I just wish that I could convince these people I come across, to spend a day in my life. Spend a day with Lucy and see how you feel at the end of it.

In reality I know I am fighting generations of prejudice but a little awareness would go a long way. So many bigots and so many targets. Is society ever going to be a place for Lucy?

15May08 - Back to Blog

For one reason or another it has been a while since the last blog. I am happy to say that there has been no reoccurrence of the incident at Joshua's school. It seems that the school was able to deal with the situation satisfactorily. Hopefully disability awareness within the school has improved and some good will come out of it.Lucy has been a little star over the last couple of weeks. She has been very content and has been eating extremely well. We think she must be having a growth spurt! It has been a pleasure knowing that feeding is going to be an easy job before you even start. It takes so much of the pressure off the daily regime and there is a sense of satisfaction from seeing empty bowls of food. We have noticed over the last few weeks maybe months that Lucy is mouthing when she knows it is meal time. We started to work on this and now almost invariably if you ask her if she is thirsty or wants some juice, she will start mouthing. This is a tremendous breakthrough and we are really excited about it. We are also starting to see that there are slight variations which may mean she is trying to tell us different things. So we are working on thirsty and hungry at the moment to try and establish a different command for each. If Lucy can start to tell us what she wants it could change her life completely. It is early days so we remain realistic but at the same time hopeful that in some small way we can improve Lucy's quality of life.Lucy has been enjoying plenty of days out over the last couple of weeks. We have been saving our direct payment hours and Helen has taken Lucy out for the last two Saturdays. She has taken Lucy all over. These pictures were at Golden Acre Park in Leeds. Lucy came home smelling very nice because she and Helen had been round the shops trying out perfume.The weather has helped a lot because it has been nice to be outside without the fear of Lucy getting too cold and wet. Lucy and I went for a walk in the park last Saturday morning and it was so nice I didn't want to go home. Lucy loves sitting in her chair looking up at the trees and just watching the world go by. I am sure I would get tired before Lucy became bored in her chair.There has definitely been a noticeable change in Lucy. There is no doubt she has grown, in fact I was amazed recently when I was shown a wall chart at her nursery showing just how tall she is. I just don't think of her that way because she is always sitting or lying. She is also generally more content and as I said before her feeding is simply excellent at the moment. I just hope that this good spell lasts for as long as possible. This Summer just might be a good one!

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.