Normal? No Thanks!

I wrote the following yesterday (Monday). I just got sick and didn’t post it, so here it is now…

Oh goodness. Yesterday’s daily prompt question is a rather pertinent one in a world where ‘abnormal’ is penalised, and ‘normal’ is praised. To be different in some way means you are not normal.

As a disabled person unable to work and reliant on medication, mobility aids, wheelchairs, and physical help from others on a day-to-day basis I am all too aware, I and my life, are far from normal. It is not ‘normal’ for someone as young as me to be unable to work. Medically, my body has never been normal. From the day I was born until the day I die, my body falls far short of ‘healthy’, and short of physical ability in day-to-day life. I am grateful I am healthier than I could be… though not as healthy as society thinks I should be. In these senses, I am not normal.

Who decides what is ‘normal’ though? This Government are penalising anyone who is sick, disabled, old, those looking for work or unable to work, poor, needy, or homeless. by labelling everyone in these categories as scroungers, and therefore somehow not trying hard enough to find work, or work that pays well enough to support a reasonable standard of living. It is ‘normal’ to be able to provide for your family, or pay your own way, in my case. It is normal to achieve certain grades in Education to go into education or training. Anyone who fails to do this is called a ‘NEET’ (Not in Education, Employment, or Training).  Anyone with requirements different to other children or teenagers has ‘special’ or ‘additional’ needs, and generally, their parents have to fight for every bit of help their child gets. If you would like to read more on this, I can recommend Jane Raca’s book, Standing up for James in which she writes of the struggle to find and finance adequate education provision for her son, and the failures of social services, especially if your family is going through similar struggles. (You can read my review of her book here). I did hear the other day that Katie Price’s request to begin a ‘free’ school with other parents of children with special needs had been rejected. Begun because there is not enough provision for children with complex needs, a claim also made by Jane Raca, though I cannot quote her directly unless I find my kindle before I publish this post!!

Personality wise, I have always been just the right side of daft. Life is more fun if you can laugh at yourself, and if you can handle tough situations with a degree of humour, it all helps, in my opinion. In this sense, ‘normal’ is boring. I would love to be more sensible and more organised though. In some ways I still feel as though I live and think as I did when I was a student, and in other ways I have grown up. I think that is a lot to do with not being able to work. In that sense, I am not ‘normal’, and here, I would wish to be. Spiritually, I tend to agree with the late, great, Mike Yaconelli. ‘Messy’ is best, and Jesus is right with us in the midst of it. I read a great post the other day to do with authenticity in church, and faith. I think I may have already linked to it in another post, but it is worth another mention. I definitely think Mike would have been the same in whatever sphere of life he was in at the time. People who can do that and get away with it are oftentimes, (though not always) my favourite kind of people because there is no ‘normal’, around them, and you never know what will happen next. Life is an adventure. I happen to agree. So did Jesus, who didn’t do ‘normal’ either. He hung out with the very people society shunned, when there was nothing to gain from doing so. Me? I prefer to aim to be like Jesus; life is more fun that way! “I have come that they may have life,and have it to the full” (John 10: 10)

Book Review: Standing up for James by Jane Raca

Jane Raca has written the book she would have liked to have read in the weeks and months following her son’s traumatic birth. Her son James was born at 25 weeks, (three weeks earlier than I was). James suffered catastrophic brain damage which left him with autism and very severe cerebral palsy, among other things. Instead of being supported as she might have expected and certainly deserved, Birmingham City Council failed to provide her family with even the most basic care, never doing a core assessment which would have ensured the needs of James parents and siblings were met as well as his needs too. However, “nothing happened” An oft repeated phrase, which meant Jane’s health and emotional needs were ignored, as well the emotional needs of her other children, and her marriage also buckled.

Two things shine out of this book: Jane’s love for James, and her son’s massive personality. I urge you to read this book, whoever you are: social work student, parent of a child with special needs, or just someone interested in their story. You will laugh lots, I can promise you that, it’s a very funny book. As well as cataloging the failures of the council and  chronicling her fight for appropriate provision for her son’s needs, Jane considers the ethical and moral issues at stake when children such as James are saved at all costs, and the implications of this for hospitals, local authorities and families themselves. You will laugh, cry, get angry and laugh some more. Go, on, buy it, you know you want to!

incidentally, Birmingham City Council have failed adults with disabilities and their families too. Several major charities took them to court in 2011 for changing their eligibility criteria (the circumstances in which care should be provided) from substantial and critical needs, to caring for those with critical needs only.  If Leeds City Council were to do this, the likes of me would not have any care provision at all. Fortunately, Birmingham City Council Social Care were judged to be unlawful, so they lost the court case and had to rethink their whole poThere are indeed currently many concerns surrounding social care which have been newsworthy of late, and new problems will continue as council budgets are further squeezed, especially when the Independent Living Fund (ILF) closes in 2015. This was a fund which provides money for care for those with the most severe needs effectively topping up money provided by social serves. This has been deemed too expensive. N.B. care is expensive! As a starting point, go and read Standing up for James!

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