Tag: disability

blog tour, books, reviews

Blog Tour: Patience – Victoria Scott

ramblingmads

If you were offered the chance to be ‘normal’ would you take it? Do we even know what ‘normal’ is?
The Willow family have been through a lot together. Louise has devoted her life to her family and raising her disabled daughter, Patience. Pete now works abroad, determined to provide more, even if it means seeing less of those he loves. And Eliza, in the shadow of her sister, has a ‘perfect’ life in London, striving to live up to her mother’s high standards.
Meanwhile, Patience lives her life quietly, watching and judging the world while she’s trapped in
her own body. She laughs, she cries, she knows what she wants, but she can’t ever communicate this
to those who make the decisions for her. Patience only wants a voice, but this is impossible.
When the opportunity to put Patience into a new gene therapy trial to cure her Rett syndrome becomes available, opinions are divided, and the family is torn.
The stakes are high, and they face tough decisions in the hunt for a normal life. But is normal worth it? What do we even consider normal? Is Patience about to find out…?


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Victoria Scott has been a journalist for more than two decades, working for a wide variety of outlets including the BBC, Al Jazeera, Time Out, Doha News and the Telegraph. Alongside her love of telling real-life stories, she has also always written fiction, penning plays, stories and poems ever since she first worked out how to use her parents’ electric typewriter.
When she’s not writing, Victoria enjoys running incredibly slowly, singing loudly, baking badly and
travelling the world extensively.
Victoria is a Faber Academy graduate. She has a degree in English from King’s College, London and a Postgraduate Diploma in Broadcast Journalism from City University, London. She lives near London with her husband and two children, and works as a freelance journalist, media trainer and journalism tutor.

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My thoughts: inspired by the author’s own family, this sweet but sad novel explores what it is to live with a complicated disability – Rett Syndrome and how a family copes with the situation. Patience is locked into her body, but she sees and hears everything around her. Her family have started to struggle and there’s an offer of gene therapy that might offer Patience some freedom – the possibility causes greater friction among her family.

Read this with tissues handy, I certainly had a little cry. I could relate to the Willow family in a few ways. My younger sister has complex learning and behaviour issues and while not physically restricted, growing up she certainly needed more support and attention than most. My husband is a paraplegic, so I also know what it is to be a carer. It can be very, very hard at times.

I loved Patience, she was smart and funny. Her frustrations were completely understandable – not being able to communicate her thoughts and feelings means her family and carers think she has a child’s mind and understanding but she’s actually an adult and quite capable of understanding everything she hears.

Eliza, her sister, and their parents all have a lot of things going on, but Patience is the person they revolve around, and they neglect themselves – which even Patience thinks is stupid.

This is a book with a lot of heart, and a lot of feeling. The author’s own sister has Rett Syndrome and you can feel the love for her in the bond between Patience and Eliza. It’s a really lovely book and although it made me cry a bit, is ultimately warm and engaging.

*I was kindly gifted a copy of this book in exchange for taking part in the blog tour but all opinions remain my own.

life, mental health

Money for being mental?

ramblingmads

I have dealt with depression and anxiety since my teens, and in the last few years struggled a lot.

My Mr suggested applying for PIP – which is a payment from the Government to help people with disabilities, mental health issues and long term illnesses afford all the extras that go along with their condition. It’s means tested and requires an interview in person.

I filled out about a million forms, submitted evidence in the form of a letter from my doctor and from the mental health centre at the hospital where I did CBT and psychotherapy.

My assessment interview was ‘near me’ in that it was in London, on the other side of town. Bizarrely it was done by a physiotherapist – obvious choice to assess someone with a mental health issue.

I was rejected on the basis I was able to walk – the application form and interview were very obsessed with mobility as a factor. Except that on my very worst days getting out of bed is impossible. So I can’t walk on those days, I can’t eat, sleep, talk, function at all.

It’s a really bizarre and completely illogical way of deciding whether or not to award someone the benefit of some money to assist in managing their condition. There are days when my anxiety is so bad I can’t use public transport so this money would have been useful to cover a cab to the doctor’s or hospital.

It affects my ability to work and manage the basic things, we’d discussed how having even a small amount would help cover costs when I’m too ill.

But no, a physiotherapist and the worst assessment ideas ever mean that I, like hundreds of others with all sorts of complex and exhausting conditions, are denied even the smallest assistance.

There are plenty of people for whom this is even more devastating – they need that money to survive. But more and more disabled and terminally ill people are being found “fit for work” by these assessments and stripped of their benefits. Never mind that there are no jobs for these people, that employers won’t employ people who need lots of flexibility to attend appointments.

Disabled workers take less sick leave than your average employee, as they feel they have to prove something, and it is illegal to discriminate, but it still happens. It’s just not given as the reason they didn’t get the job. Hidden conditions, invisible illnesses or disabilities, mental health conditions are even harder to prove discrimination against, and likely to receive less empathy.

My last full time permanent job ended because of a complete lack of understanding and support in my attempts to manage my health and continue working. Now I temp and the Mr covers much of our expenses while I look for something longer term.

I don’t expect the government to support me, I don’t intend to demand benefits and sit at home. I want to work, the stimulation and mental exercise of work is good for me. But a little extra to help out during the really bad days isn’t a lot to ask for.

This new system is so flawed that it’s already caused deaths, some people genuinely can’t work, and probably contributes to so many conditions worsening and costing the NHS more money to treat and manage.

It’s cruel and unfair and dangerous. The people behind it, many of them with zero medical knowledge, should be ashamed.