Wednesday, 18 January 2012

'Where ignorance is our master, there is no possibility of real peace.'

I was about to get on my soapbox about the recent government carry on with the Disability Living Allowance but many more are articulating themselves better on this issue than I could so I'll refer you to them here and here.

I sat through another Parent Council meeting this week and although I always try to be objective, it's really hard sometimes. People say things that automatically make me see red. It's hard not to always be on the defensive when talking about children with disabilities in a room full of people with 'normal' kids. A's high school is what is known as in Edinburgh as an inclusive school meaning that there is specialist provision within the school that caters for specific disabilities. Anyone interested on how this works and professional codes of practice can find out more here.

When discussing school success rates and how it compares against comparable schools there is always at least one parent who says "we won't be top of the league because of all of the special needs kids". The meeting before last, the head of the support for learning came in to give a talk on why the school included a high number of disabled kids, specifically those with autism. Normally a noisy and inquisitive bunch, when he asked if there were any questions, the room fell silent. When he asked who in the room knew about this kids before his presentation, a large number of hands went up. The same hands who professed to know nothing a few meetings before when I started banging on about the kids. It is frustrating to hear and watch but it's not done out of malice but fear. Fear of saying the wrong thing within the context of a presentation on special needs. They are not as fearsome with their quips when we discuss stats and league tables though. I won't go into what happened the week that one woman stated that she did not want her son to go anywhere near these 'slow' kids in the school lest someone think that he was 'slow' too! I will defend the school to anyone as I believe in what they are doing but still within the school community we come up against opinions like these consistently.

One of the things that I hope this blog does, in my own daft way, is to raise awareness about what life is like living with disability, or rather parenting an autistic child.Through sharing experiences we can learn and empathise with other parents out there.

We spend so much energy just trying to live like any other family, and it doesn't always work. Often we come across people who just don't understand. People who say thngs like he's not that autistic or perceive his ASC related behaviours as simply bad behaviours.

Here in the UK, I think that although there is much to be done about raising awareness of autism, in general, our ignorance regarding disability is due to that fact that we simply don't ask for enough information. We are so terrified at making a faux pas that we simply ignore it and smile and continue on our way, not understanding the complexities of many different disabilities. We can only hope that these barriers will break down one day and that we will stop being afraid to ask questions for fear of offending someone.

Children are the most understanding about disability. They are not afraid to ask questions and that is great. I wish the majority of adults that I meet could only be as brave.

As much as this frustrates me, occasionally I reminded of how lucky we are that we have such an embarrassment factor, however antiquated it may be. In the US, there exists pockets of consciousness who are not only completely ignorant regarding disability but who also hold the most ridiculous, dangerous and backward viewpoints. It is disgraceful and perhaps more shockingly, these are held by public, educated figures.

There has been a story circulating on the Internet about a poor little girl who is being denied a kidney transplant by her hospital. This darling little girl, Amelia, has a condition called Wolf-Hirschhorn Syndrome. A condition that causes developmental disabilities caused by a chromosome abnormality. More can be found about the syndrome here. The syndrome shortens the persons life span, causes heart defects and a whole variety of other problems. There is no known cure and a treatment plan is always individualised. Amelia had recently undergone heart surgery but now her kidneys were failing. Her parents were referred to a transplant team and were prepared to donate one of their own kidneys (whoever's was the best match) only to be told that the team would not consider their daughter for a transplant because she was mentally retarded. Mentally retarded. Can you belve it? Despite surviving a heart operation and living well beyond the initial prognosis, her parents were told that they would just have to wait until she eventually passed away. There was nothing that they would do. Now there is, as always, two sides to any story but the hospital have not commented yet.

The very idea that a child's life is not worth prolonging but she is mentally retarded beggars belief.

Today, another piece of news from the US arrived in my inbox. A well known Virginian lawmaker and Republican candidate has given his views on disability. This man claims that mothers who give birth to disabled children are being punished by God for previously aborted unwanted foetuses. Yes, you read that right, it is God's punishment.

“The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children,” said Marshall, a Republican.
“In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There’s a special punishment Christians would suggest.”

This comes from a man who believes that Obama's planned healthcare reforms are designed to steal your soul. Enough said, I think.

This week, I am putting my soapbox away...



2 comments:

  1. I agree with so much of what you have said here.  My younger son's (who have no disability) school is also inclusive and has several children with various disabilities including autism  I do worry when I hear other parents views, especially about one boy who keeps trying to escape!
    I think that some people are just ignorant about society in general and what others have to deal with.  They like to live in their own little bubble. 
    Our school has a catchment which takes in a lot of new houses and also some council housing, at one parent council meeting a parent stated that we could ask parents for as much money as we wanted (for fundraising) as

     'all these people on benefits can always afford a big telly or fags or a night out'

    He also said that he wouldn't be sending his children to the local secondary school as it was full of neds! 

    In the end we are all part of the same community and we should learn to live together and include everyone in this community.  Until everyone is accepted as having a valid part to play - whether in the school community or in the wider community then it will remain difficult to break down peoples predjudices.

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  2. I stand up and applaud you....my grandson has many many disabilities ( non visible) ans attends (when well enough) a main stream school. the school also has a blind girl in P5 and a boy in a wheel chair in P4 - and why not? they have the same rights to an education, and I feel by them being educated with main stream children their generation should grow up less ignorant and more tolerant to different in the future

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