USA Lupus research project needs participants.

Award winning online blog magazine LupusChick 501c3, in collaboration with USA Clark University,  are researching aspects of Lupus Disease and needing participants. They believe this could be a great source of information to better understand what is lacking in the education of and treatment of Lupus patients.

Contact them on the link below to participate or if you have any  questions about the survey, which is anonymous - no need to enter any personal identifying information.   Click here for further information.

Mushroom soup – a scrumptiously delicious, cheap, healthy, gluten free recipe with vegan option at approx 32p a serving (makes 6 servings).

Mushroom soup - My favourite for a quick delicious lunch.

You can't beat a warming bowl of healthy creamy (without the cream) mushroom soup - very satisfying.

·        Preparation: 15 minutes

·         Cook: 40 minutes

·         Freezable

·         Easy

Ingredients

§  1 tbsp olive oil (or you can use 50g of butter)

§  1 onion (large), chopped

§  3 sticks of celery, chopped

§  Punnet of mushrooms (chestnut and/or white mushrooms), sliced

§  500ml vegetable stock (add more water to cover mushrooms)

§  Slosh of sherry (optional - i like it!)

§  250ml milk (soya milk or alternative to make vegan)

§  4 heaped teaspoons corn flour

§  pepper (to taste)

Method 

1. Put oil or butter in pan and heat - gently fry onion till soft, add mushrooms and celery, then fry for about 5 minutes.

2. Put the stock and sherry in and stir, reduce heat to low and cover to simmer for 15 minutes.

3. Meanwhile whisk the flour and milk in a bowl and pour into soup and stir, simmer and cover for 15 minutes, stirring now and then.

4. Add salt and pepper. let the soup heat up for about 3 minutes (don’t boil). If you're not keeping an eye on your carb, enjoy with fresh crusty bread and butter.

Today I got reduced price mushrooms at 53p a punnet. I used 2 punnets and I reckon the total cost for 6 hearty helpings, (without bread and butter), was definitely no more than £1.90 - about 32p a serving.

Carrot and Ginger (but not so much ginger) soup - A cheap, low fat, warming, healthy recipe for lunch.

Carrot and Ginger (but not so much ginger) Soup

Today I cooked this really cheap, warming, healthy soup. It is from a BBC recipe that I slightly adapted to fit in with what I had available. Making soup is an excellent way of  using vegetables in season, or those that have gone a little past their best in your cupboard or fridge, into lovely, healthy meals, that will keep you feeling full for several hours. I have homemade soup almost every day and if I get a sudden hunger pang in between meals, soup often comes to the rescue,

This is the link to the actual recipe.

But as I said I adapted it slightly by:

• using red onions, 
• less ginger, 
• no nutmeg (uses All Spice instead as that's what I had in),
• more liquid, but only the one stock cube
• about 800g of carrots, and
• I didn't sprinkle almonds on the top. 

I reckon it has cost me about £1.20 - £1.50 at the absolute max (prob much less) for 4 large or 6 regular helpings in total and if it wasn't that we were having friends over for lunch tomorrow I would freeze at least 2 helpings of it, but I'm sure there won't be any left. 

It would also be lovely by adding a tin of low fat coconut milk too.  This would add 50p to the price if you bought it from Tesco's World Food aisle, this/last week.

How to make sweet potato "toast"! A low carb healthy option

What a great thing to try.  Low carb and healthy too.  Great for diabetics and people wanting to eat healthily. I'm certainly going to try it with fish, tuna probably.  I may try it with a little marmite spreaded on it , then cottage cheese with pineapple slowly melted under the grill on it.  Yum.

Guardian writing opportunity about disabilism and discrimination.

Disabled people are the world’s largest minority, but continue to be physically and socially marginalised from mainstream society. Share your stories of discrimination.    says Guardian writer Naomi Larsson

More than one billion people live with disabilities across the world, but they have been marginalised, excluded from mainstream society, and in many places denied their basic human rights for far too long. People with disabilities are more likely to live in poverty, they are nearly three times more likely to report being denied health care, and disabled children make up a disproportionately high number of the 60 million children currently out of school.

While the new sustainable development goals launched in 2015 have promised to leave no one behind – thereby including disability rights in the development framework for the first time – people with disabilities won’t have their rights realised until attitudes change and the mainstream stops excluding people.

How has this marginalisation affected your life? We want to hear from people from developing countries about a moment you felt excluded because of your disability. What are the daily struggles you face as a result of stigma and judgement?

I think this offers a great opportunity for disabled people to get in to print in a national newspaper.  Please pass it on to people you know who might be interested.  We should use this chance to tell our stories - not to just moan but to show non-disabled people what our everyday life experiences are like (OK- you can moan if you like). Click the link to get to the article and form for sending in writing.  Good luck!

Article and form to send in your writing - The moment I felt excluded because of my disability.

My new blog - at last.

So here it is, at long last, my new blog.  I feel like I'm entering a new season in my life and want to record and share what happens on here. I've called it Ali Hayward Online because I don't want it to be just focussed on disability happenings, but other things in the world around us as well as other things in my life.  For example, my weight loss experience - dropped 76 pounds since Aug last year, and continuing to explore new ways to eat as well as possible on my disability benefits budget.  As well as my MA (which I took the semester off because I've had one infection or health problem after another since just before Christmas and felt exhausted) I have also been working towards completing the Award in Education and Training (formally known as PTLLS), which will qualify me to teach adults in the Lifelong Learning Sector. I'm desperate to get off benefits and not have to rely on this government, but whether I am being realistic, with my level of disability, we'll just have to wait and see.

So please follow my blog. Scroll down and type in your email address to start.  Also check out my daughter's blog, it's called The Cerebral Palsy Blog   I'm sure she'd love you to follow her too.

Buddhist proverb

When the student is ready..... - Buddhist proverb

Cameron - Do Something Funny for Money

Written 4th April 2013

I love Lenny Henry. He’s on Comic Relief now. What he’s saying is great. He’s giving a list of change and progress made by donations from those that give. In all honesty, it’s impressive. Thousands of lives improved, saved, changed forever by what Comic Relief has done. The banter of hilarity from mainstream tv progs specials, draw me in and I chortle and laugh at the slightly more gallant and risque presentations. LittleBoo has done her bit and went to school dressed in her Red Nose day specials, with £1 in hand, 50p for not wearing her uniform, and 50p to buy two cookies/buns – baked earlier in the week by each class. So we’re sucked in….. .

I was telling LittleBoo about how rich we are in worldly terms. We have everything and more than we need and yet we are considered to be poor by this country’s measuring rod. My daughter is one of the many children who are considered to be living below the poverty line, and as a disabled child, a Child in Need too. Like most families reliant on disability benefits we don’t have holidays abroad, or savings, or posh clothes. In fact we don’t have a disposable income. Yet we live, with food on our plates, bought from the weekly money we have and endeavour to choose the best value healthy food we can, more than likely from the reduced shelf.

Meanwhile the government implements so called austerity measures. Disabled people, like us, face an uncertain future. It’s all too easy to suggest I get a job. Don’t get me wrong, I aspire to being off benefits and working. Yet how realistic is this for me (and thousands of other disabled people), after years of experiencing a degenerative impairment that has degenerated, almost on cue? Truth be known it’s hard enough to be part of society when faced with the daily endurance of pain, tiredness, restricted mobility and complex emotional feelings of being imprisoned by the uninvited experience of impairment, perhaps inevitably leading to some form or degree of frustration or experience of mental distress for some. Good days, bad days? More likely good hours, bad hours. Not much for a potential employer to hold on to, regardless of our the skills, experience and potential.

Austerity cuts are real and will very soon have a real impact on many of us. Yes we get more benefits than non disabled people, so many may think it’s only fair that our benefits are cut. The propaganda spin from Government via the papers has in large been successful. We are scroungers, thieves and exaggerate the effects of our impairments, or don’t even have impairments and make them up. Yes there are those who cheat and lie, but the statistics have always stated this figure as less than 2% of all applicants of DLA. We receive more than non disabled people because our situation is more often than not long term. We’re not going to get better – we’re not actually ill, we’re disabled! We can’t pull ourselves together and become non disabled. We receive more than non disabled people because it costs more to be disabled than it does to be non disabled. It’s a just a fact.

For some receiving care at home replaced the ad hoc systems of care provided before such things as Direct Payments and the Independent Living Fund came into being. Independence came at a price, the price of chargers, brought in after our taste of freedom had become part of way of life. Before then we all believed that our Council Tax paid for services from local government. To add chaos to confusion the amount of charges varied from authority to authority and bore little resemblance to income. For example, disabled people on Income Support and DLA might pay an amount equivalent to the total of their Income Support severe disability premium and all of their DLA care component, whereas disabled people receiving the same level of package who were working paid nothing! Well that makes a lot sense.

Care means, assistance with getting up, washing, personal care – yep wiping bums, taking medications, feeding, cooking, cleaning, driving, etc etc. Care means being able to live life to full potential, which is different for each individual. Cutting our care funding means a universal experience of becoming trapped and imprisoned again. It means we will never reach our full potential in anything without neglecting another basic part of our lives.

Comic Relief quotes the British public give something like £8b a year to charities. It’s relatively easy for us to give money from however little or however much we have. The Govt do their tax relief thing and it all looks like a healthy – and fun – way for us to support those in Africa, or those down the road. It’s fair, we’re all involved. Comic Relief just spouted, ‘Africa is fixed’ in one of their VTs. People cheer and feel good. They’ve solved Africa with humour! How good of them.

Meanwhile the Bedroom Tax, as it’s fondly been called by the papers, is literally days away. It will affect many and particularly disabled people. The lack of insight and understanding of the government is no less than astounding. God help those disabled people in receipt of Housing Benefit, with an adapted or purpose built accessible homes and a so called ‘spare bedroom’. What choices are available for them to downsize and not lose more of their benefit to the government whose leader stated, something like, a government will be judged and measured by how it looks after the most vulnerable members in society. And that statement in its self is not tinged, but saturated in a paternalistic, disabilist over shadow. We are vulnerable, but only when society organises it self in away that doesn’t allow our parity and equality with others. When the needs of our impairments are met, we can take part as fully as we want in our societies. Then slowly the societies we are part of develop in to communities, which reflect not only the diversity of the people in it but also the value and wealth of potential those people share. Disability costs, it’s a fact.

Meanwhile LittleBoo saw a centre, somewhere on Red Nose day CBBC coverage, for people with Cerebral Palsy. Of course she wants to go. The coverage of UK projects Comic Relief funds, has been reduced to a few VTs, with the main concentration of VT s depicting issues affecting children in Africa. Perhaps this shift is in answer to the complaints and campaigns of disability activists, who led the voice to change how we are portrayed. Maybe this is a victory of sorts? I’m not convinced. It’s not as though the projects funded have disappeared or changed. I feel they’ve been sanitised in VT s put together.

Russell Brand talked about, the karmic wheel of existence, applying it to not getting sad about the UK woman blinded by domestic violence, but giving money to make sure she’s ok. (Digression – the Govt spend more on PR each week than organisations like Rape Crisis receive in a year.) But what about Africa and the health issues raised. Of course these are very real issues and surely can’t be ignored. There was no mention of the debts these countries are made to repay each year. There was no mention of the corruption within some of the governments receiving aide that never reaches those intended.

But what about Comic Relief? We’ve had an evening of ‘special’ tele. It’s been very funny at times and we’ve heard all about the corporate world and how much money they’ve raised. There’s no doubt that many individuals have donated too. Then there are the celebrities who’ve done there bit, no doubt many of them genuinely too. All in all it’s amounted to £75,107,851.00 just this evening. It’s Comic Relief’s biggest ever figure. Brand talks about the impact of such money and how CR has made a difference to so many lives, and how ‘fluffy’ we can feel for knowing how much we’ve done to change the world. None of this makes any difference to the relentless fear disabled people experience when considering their futures. None of this will bring back those who’ve committed suicide because they can’t cope with the way they’re being treated and misunderstood by the state. None of it will reassure the parents of the disabled children born today, this week, this month, that their child is being born into a society that understands the complexity and depth of disability issues and that once they’ve died, their child will be living safely in a society where equality just is, and doesn’t even need discussing.

To me it’s very simple. All I want is Cameron to ‘do something funny with money.’ All he needs to do is collect the correct tax from businesses and corporations. He needs to fill business tax loop holes and stop the deals being done, that let businesses get away with it. He also needs to stop non disabled people claiming disability benefits illegally. And finally he needs to ensure that the way he organises the UK doesn’t disable or imprison disabled people further. Of course that’s the hard one, it’s much easier to dismantle the welfare state and demonise those who depend upon it now, those who will become disabled and those who will be born with disabilities in the future. Perhaps the best thing to do is just vote him out.

*Disability, disabled people, impairment, relates in the widest sense to all forms of disability, including those with learning disabilities and those experiencing mental distress.