Hot Air

Someone, please tell me what to do now?

Posted on May 11, 2015 | 4 comments

Someone, please tell me what to do now?

Last Thursday, my husband and I skipped off to the polling station with my downstairs neighbours and our children. They played tag between the voting booths and we shushed them and giggled at the same time, delighted to be there and to vote. For weeks leading up the event, I’d been obsessed. I hadn’t just been reading articles in the Guardian, my usual read – but also my political opposites, the Telegraph and even sometimes even the Daily Mail. I wanted to know all sides. And, I hadn’t just read. I was writing myself. My post on the shocking truth behind Samantha Cameron’s Daily Mail article went viral and had over 100,000 hits, crashing my little blog for several hours. I’d also written about what being disabled and on the housing registered looked like (Answer: not good) and posts about finding childcare and the challenges of returning to work when you have a disabled child. I’d even bared my soul and my desperation at NHS England for torturing me for six weeks on whether they would let me live or die – a circumstance brought on by a Tory-led push towards privatisation that was costing the NHS billions of pounds. I wrote all these things and I thought, “Well, some people in the electorate are bound to listen. No one wants these circumstances brought upon themselves or their loved ones.” But, the truth is, people sympathised with my story (and other like mine) but they didn’t relate. They don’t see how these cuts will hurt them or their children because it hasn’t happened to them yet. £12 billion in cuts have to come from somewhere. And it isn’t just going to be the cancer sufferers like me or the disabled children like my daughter – it is going to be everyone, Tory voters included. The campaign was won on a rhetoric of fear. Fear of immigrants. Fear of welfare lairs draining resources. Fear of Europe. Fear of Scotland. I didn’t get any of it. I wouldn’t – being an immigrant myself, who used to be a teacher, but now has to depend on benefits. (And, I really didn’t get the fear of Scotland. Now, we may get exactly what the Daily Mail and the Tories terrified the nation with: the SNP so strong they will be a major voice in Parliament, so strong they can rule themselves and leave.) But I am tired of reading about how selfish or self-serving or greedy Tory voters are. I don’t want to believe that. There is an elite element of the party that is rich and out of touch with the rest of society (one of them is ruling the country now). But, my neighbours and friends and family who voted Tory – and I’m assuming some did – probably did so for obvious reasons. Like that we live in a conservative country. Or, that David Cameron painted himself as compassionate and looked more “presidential” than Ed Miliband. That people like their local Tory MPs – and having met Robert Buckland MP, who led the inquiry into childcare for disabled children, I can see why. That people don’t like change and the Tory campaign made theirs a campaign of fear based on exactly that. No one in the country believes my six-year old, severely disabled daughter should have her benefits taken away. No one in the country wants me to be denied a treatment to save my life so that more money can be spent privatising the NHS. But, this is the circumstance we are all in now. I’m not sure what to do next. I don’t believe social media campaigns work. Yes, they...

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24 hours left to register. Don’t think your vote will count? Think again.

Posted on Apr 19, 2015 | 0 comments

24 hours left to register. Don’t think your vote will count? Think again.

There are only 24 hours left to register in Britain to vote in the General Election. Don’t think your vote will count? Think again. As Tania Tirraoro of Special Needs Jungle points out there are 12 million votes out there, ready to be cast, if disabled people register and vote. According to BBC Ouch, that’s 20% of the voting age population. Tania, who is both a parent to a child with special needs and disabled herself, says: “It’s not just my own health condition that depresses me. Looking up from my own self-pity brings me face to face with the way the Coalition government has continually put the boot in to the vulnerable, particularly my fellow people with disabilities, while spinning it to look like the very thing that will save Britain’s economy for ‘hard working families.'” I can’t help but agree with Tania. Since the Coalition government came to power, their legislation has directly hit our family, the same “hard working family” with two teachers in it, that the Tories pretend to support: – Our local council significantly cut special needs transportation to school – The respite holiday care for all the children in May’s school is under threat – The Speech and Language Therapy team – the same one that taught May to eat – was dismantled – Equipment we used to receive, like sleep systems or communication equipment, is no provided. – Local council’s budgets have been cut by 40% destroying an efficient and effective team assisting our family – There has been only one disabled homes in our area we have been shortlisted to live in and that is only the tip of a disabled housing crisis across the country. – Disabled children are being refused access to early years education – their legislative right. – Money for disabled children is not ring-fenced so cash-strapped councils spend it elsewhere. Where is the shock and anger? How about at the ballot box? You only have 24-hours left to register. It is simple, online and will take five minutes....

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Why the Tory “right to buy” plan is just wrong

Posted on Apr 15, 2015 | 4 comments

Why the Tory “right to buy” plan is just wrong

I’ve been conversing with a mum this week. A mum like me, who is also desperate for a home that doesn’t endanger her severely disabled daughter with every step she carries her down a staircase. I read about her plight earlier in the week. Leanne Mhamdi lives in Grangetown with her husband, son and daughter, Nicole. Nicole has epilepsy. Like my daughter, May, she also has profound learning difficulties and cerebral palsy. She is tube-fed and relies on their care 24 hours a day. The day after I read her story – the Tory party announced with great fanfare their new flagship policy to extend the right-to-buy scheme to housing association tenants. Right-to-buy gives tenants the right to buy their home at a reduced rate. Introduced by Thatcher’s government, the Tory’s now want to extend it out further: a discount on buying a housing association property that will be capped at just over £102,700 in London and £77,000 for the rest of England. From the Guardian, “The proposed discount will be worth 35% for a house after a housing association tenant has been in the house for three years with the value of the discount rising 1% for every extra year the tenant has rented in the public sector. In the case of a flat, the discount will be worth 50% after the first three years, rising by 2% each year afterwards.” What social housing tenant wouldn’t be tempted by that? How about the thousands upon thousands of tenants that can’t afford that mortgage even with the discount? Or, the thousands who don’t live in social housing at all so wouldn’t qualify and can’t afford to buy their own home? But, let’s just say they all could and the money would be plowed back into new housing, as the Tories claim. Families like Leanne’s and mine are desperate for homes. The private sector doesn’t offer anything – or barely anything – suitable for disabled people. The Tories say their plan will create “a £1bn brownfield regeneration fund that will produce 400,000 new houses over five years.” But, some simple maths (£1,000,000,000/400,000) means only £2,500 will be spent on each home. If the Tories could pull that off, it would be a mathematical miracle. The last time you could buy a home for £2,500 was 1960. £2,530 to be exact. I contacted Leanne who has fought tooth and nail to get be prioritised on her local council’s housing list. She remains in Band B despite the face that her daughter, who is 10 years-old, is much older than May and also bigger. Leanne and her husband sleep downstairs on the sofa to be with her. “I used to put her with me in my bed if she was having more fits than normal. I can’t even do that now because she’s too heavy to carry upstairs. Even if I did, I would never forgive myself if I dropped her,” she said in the article. To me, Leanne admitted she worries she’ll have to give Nicole up to care. “If they can’t do it then I’m stuck in this house and I’m just gonna have to give up my daughter… I can’t cope living in the house caring for her.” It is a fear I’m familiar with. She told me, “I feel like I’m coming to a nervous breakdown… I can’t afford to be ill.” She gave up work to be Nicole’s full-time carer.  Even a conservative paper like the Telegraph thinks this plan is lunacy. Why would we spend a billion pounds subsidising the selling off of valuable social housing stock, only to come up short in the end? Let’s please keep the social housing stock we have and spend far less creating new, accessible houses...

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The shocking truth about Samantha Cameron’s interview

Posted on Apr 6, 2015 | 94 comments

The shocking truth about Samantha Cameron’s interview

Samantha Cameron has given her first interview in years and “finally” revealed all to the Mail on Sunday about how she felt when her disabled son, Ivan, died.    

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The video that changed everything

Posted on Mar 12, 2015 | 8 comments

The video that changed everything

Last week, ITV filmed May and I in our housing showing the reality of disabled housing. As we filmed, the reality of our lives wasn’t just highlighted in the piece, but starkly apparent to me. Only an hour later – before it even aired – we received our first contact from Lambeth council. I had to carry May up the stairs; we have four flights at various points in the house, inside and out. In the clip below, you can hear me puffing as I heave her up those stairs. They asked me hard questions, emotional questions that cut to the heart of what our lives are like. Not all of it made it in, but it did make one thing clear to me: we need better housing and people like us do as well. So, I’d ask you to take a look at the Leonard Cheshire Disability’s Home Truths report. They were the impetus to all of this happening and I’m grateful that they gave us the opportunity to share our story and change our lives. Because we are prioritised for housing now and it is only a matter of time – and not an impossibility – that something appropriate will come up. Here’s the video:...

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