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Penny Melville-Brown OBE has added a new blog post!

Barely a break

Easter has just scurried past with hardly a blink – do you find that the months go past faster and faster?

To kick off the holiday, I threw together rather a wild flower arrangement of curly twigs and decorative eggs picking up all the bright colours of Spring tulips, narcissi and hyacinths.  It seemed a pity to cut them from the garden but worth it when just a few filled the whole house with their fragrance.

With the Schools on holiday, a couple of young students came to cook with me: Sam from Essex and Luke from Fareham – they were keen to get some recipes under their belts. Our main delight was the gift of four dozen quail eggs delivered by Rodney (the builder) from the small-holding of his brother, Terry. Quail eggs and dipping mix

How to do justice to such an abundance of generosity?  The first dozen or so were soft-boiled, marinaded in soy sauce and then charred in a hot pan.  Ready for dipping in toasted sesame seeds and salt, they were perfect with drinks.

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We have added three new articles by Martyn Sibley

Inclusion Campaign Launches

I’ve been fighting hard to keep positive lately. I know it’s only my view, but the world has seemed more fearful. More divisive. More hateful. In the social justice world there’s been horrifying accounts. In the disability world there’s been government cuts and hate crime. People are losing care funding, Motability cars and their independence.
Luckily I also noticed the positive things in life. This basically happened when I stopped watching the news. It’s full of extreme negativity (as in skewed to never have positivity). Since I started looking around me. Hanging with family and friends without the dreaded fear in my head. Observing people in my town. Engaging with amazing people and projects online. I’m feeling more optimistic.

I’ve been involved in a local time banking initiative. Where people give time for credits. Credits than can get hours of support from other members. Or credits that can be swapped for vouchers. For example I could teach someone about social media. In return someone else could help me with the gardening. Or I could go to the cinema after giving so many hours.

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How to be a Kick-Ass Disabled Person

I’m a professional disabled person. I’ve been doing this barrier breaking, rights fighting thing for a while now. Trust me I’ve learned the ropes.

So I decided to share my top 10 tips for being a kick-ass disabled person. Be sure to share your ideas too in the comments section and on my @martynsibley social media channels.

And remember don’t take life too seriously. It’s often what you make of it that counts.

1. Planning

PlanningWhen you need to use a hoist and accessible bathroom to pooh, planning is your friend. When I flew to Australia I literally had to plan when I used the loo, to give me a fighting chance of reaching Singapore safely. Yea, aeroplanes are not so accessible in that way either.

It’s not just pooing that needs planning. When you are a kick-ass disabled person you have to plan around health appointments, Personal care Assistants, accessible venues, and company policies.

Did you know: to request ramp assistance at railway stations, you should give 24 hours warning? Don’t know about you, but I don’t know when a meeting will finish tomorrow (both for work or social reasons).
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Ruth Owen – Transport and Individual Responsibility

“All I was doing was trying to get home from work”

(Quote from Rosa Parks on the civil rights struggle for inclusive transport.)

Last week I MCd an event run by Open Inclusion on inclusive transport. We had seven speakers in total. Four disabled people with a range of impairments. Three industry people from Virgin Atlantic, Network Rail, and Uber.

It’s not so surprising to hear the take away was ‘we’ve come far, but there’s a long way to go’. However getting everyone together was very important. For disabled people to understand industry, and industry to understand disabled transport users. The solutions began flowing.

Ruth Owen is my latest podcast guest. Transport is one of two key points raised in our interview. The second being our personal responsibility to speak out against injustice.

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Making a House an Accessible Home

Making a House an Accessible HomeMost of my recent experiential posts have been about work, leisure and inclusion for disabled people. I’m all too familiar with the need for accessible housing, care support, and enabling equipment. However once it’s in place, it’s less of a concern.

Recently I moved house. The 1 bed flat was great for a while. Having saved up, a bungalow with a garden offered a better home life. Doubly important as I work from home.

The process was stressful. Estate agents. Mortgage advisers and lenders. Solicitors. Removal company. Builders. Gardeners. Everything people go through regardless of disability. You know what I’m saying!

Then throw in the need for wooden flooring (carpets are a nightmare with muddy wheels). The need for ramps. The need for open space. The need for general accessibility. The need for disability equipment.

In the previous flat I’d had a wetroom shower, manual hoist and shower chair on wheels. So I’d squeeze them in and carefully place everything for my transfers. The transfers between wheelchair, bed, shower chair and so forth. I’d then be pushed from the bedroom to the bathroom.

In the bungalow there was a brand new bathroom with a bath. The cost would have been high to strip it and create a wetroom. Plus the space for the mobile hoist was minimal. So it made sense to explore other options.

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My Disability Diary By Mandy Edwards

Mandy Edwards
Mandy Edwards

I have to admit that the thought of beginning a regular blog about my life as a disabled woman feels a bit scary,

a bit like inviting over the new neighbours in the hope that they’ll not only accept me, but will also be able to ignore the social cobwebs. My social life over the last nine years seems to have existed mainly around hospital wards, outpatient departments, and hydrotherapy sessions, and my most enduring relationships with a string of different specialists! As any survivor of a spinal cord injury will tell you, it’s never just a ‘broken back’ thing, it’s also a bladder and bowel thing, and a pain management thing, interspersed between daily physiotherapy routines in an attempt to reboot damaged nerves. Having been through seven major spinal surgeries, one fancy electric wheelchair (thanks to the generosity of the Mobility Trust) and the on-going dedication of a Canine Partner, I’m finally at a place in my life where I can start looking ahead and that’s the journey I want to share with you all. Am I nervous? Am I heck! My off beat humour may has got me though many tricky manoeuvres in the past, but it remains to be seen if it will work for you too!
For the majority of the last nine years, my life has been essentially home based, as basic tasks proved time consuming and tiring to master alongside regular spinal surgeries and systemic management systems. Without my canine partner Tally I would never have got as far as I have today. I can still remember exactly where I was and what I was doing when my mum passed me that article in the British Medical journal about canine partners. A doctor, a keen skier and newly diagnosed paraplegic, had been frustrated by the limits of an overburdened NHS and so turned to the charity Canine Partners. I remember that moment so well because I actually laughed mockingly at my mum. How on earth could a dog possibly improve my rotten life? I’d half sneered as I glanced angrily down at the article (I didn’t cope well in those early days!). Yet from that moment on, the rusty cogs of my independence began to turn! Tally came into my life eighteen months later and was to become my personal carer, motivator and physiotherapist during some of the toughest times of my life.

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Jenny Seagrove

Jenny Seagrove
Photo by Kate Lloyd

We are delighted that Jenny has agreed to being one of our Judges for this year’s photographic competition “A World of Unfairness”

Jenny Seagrove is a well known English actress who first came to attention playing the lead in a television dramatisation of Barbara Taylor Bradford’s ‘A Woman of Substance’

Since then she has appeared regularly on TV, on Film and in the Theatre

But she has another very important role. In August 2011 she founded the ‘Mane Chance Sanctuary’ after receiving a call from a acquaintance who was no longer able to financially care for her animals. It subsequently led to the formation of the charity later that year. This, in her own words, is how the charity has grown from that crisis to what it is today.

“When the sanctuary was started 5 years ago, it was borne out of crisis. A group of about 80 animals were in trouble as their owner had totally run out of money. As the the first year progressed and the dust settled all but 20 horses were rehomed and a shape began to inform. A pretty unique way of looking after the horses was put in place and a care routine based on real regard and observation of the horses, on every level. We do not believe in negative dominance but rather positive reinforcement, working at the horses pace.

We have always known that horses are special in terms of the horse human connection, and we started visiting ‘The Shooting Star Hospice’, with our little Shetland ponies. The moments of joy that some of their very sick young children got from those visits were breathtaking.

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Amy gives her advice on preparing for a hospital stay

Hi everyone! Today I’m going to be talking about how to prepare for a hospital stay.

Little me-I’d only ever had one operation in this pic!
Little me-I’d only ever had one operation in this pic!

An upcoming stay in hospital can be a very nerve racking, daunting experience for people of any age so I’m going to try my best to include tips and information that will hopefully help you or maybe someone you know!

I have spent a lot of my childhood in hospital for surgery including my amputation at age 8.. I’ve tried my best to look back and remember things I enjoyed that helped me at the time or things that I would’ve found helpful but didn’t do! I hope this post helps people now and in the future prepare themselves for a hospital stay!

Bring small personal items to make the hospital feel more like home:
Bringing small things from home can really help make the hospital seem like a much comfier and more relaxing place to be in.
Something incredibly lovely I remember about one of my own hospital stays is another family on the ward buying me a teddy bear as a gift – It was so kind and It really did make my hospital bed feel more like my own.
Some ideas of things you could bring are:
A pillowcase from home, a cushion, your favourite book, a portable gaming console, family photo albums, a diary – it all depends on what you’re interested in!

Arrange visits beforehand:
It’s a good idea to let your family and friends know the exact dates and times they will be able to visit you during your hospital stay. You can plan and arrange with each of them when is best for them to visit you – this way they have you ‘in their diary’ as such, so you will definitely be getting visits which will help your well being in hospital tremendously. When I was a child in hospital visits from my family members really cheered me up and made the days go so much quicker!

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My Disability Diary By Mandy Edwards

Mandy Edwards has shared her diary with us at Disability Talk

Before I begin blogging about life as a disabled ambulant woman I would first like to share some snippets from my past. An insight into my journey from able-bodied to disabled person

Disability Diary by Mandy Edwards
Mandy Edwards

alongside my beliefs about the positive effects of disability in my life. (Yes I really did say positive!) The definition of disability under the Equality Act 2010 states that

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

Without a doubt my disability continues to impact on aspects of both my life and those who love me. However if I’d created that definition I would have replaced the phrase negative effects with limitations. Why? Simply because the word negative for me conjures up a somewhat pessimistic, bleak and defeatist outlook and my experience of disability, however profoundly challenging, has not been all negative. In fact I would go so far as to say that disability has been my enabler, a teacher who from the start set the bar impossibly high, forced me to dig deep and find courage that I didn’t know I had, through lessons that were very costly but proved invaluable. As I look back now on the last ten years I can see that I’ve become a far more compassionate and empathetic human being and I actually prefer Mandy AD (After Disability) more than Mandy BD (Before Disability). That’s not to say I don’t miss the Mandy BD. There are times when I crave her physicality like an addict, longing for just one more hit on the tennis court, one more stroke of front crawl in the swimming pool or one more jog around the track. Acceptance has been my particular Kilimanjaro but I am more than half way up that particular cliff face, can feel the wind of freedom on my face, and that feels like a positive place to be right now.

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2 New Articles by Martyn Sibley

Tony Heaton – Activism Through Art

Buckle up guys. Episode 3 with Tony Heaton is a long one. The stories told by the CEO of Shape Arts were too good to cut them short. Plus Tony’s lust for life shines the whole way through our interview.

Martyn Sibley - Travel
Martyn Sibley

I first met Tony when I was looking to leave Scope after 5 years there. A job was going at Shape Arts for their marketing manager. In my late 20’s it was a big jump, with lots of responsibility. Unfortunately I didn’t get the job, but Tony had wanted to give me the role. So much so he wrote a handwritten letter of encouragement for my future.

A true gentleman.

Over the years Tony has managed music bands, studied at art school, fought for disability rights, and managed high impact organisations. His biggest claim to fame is being commissioned for the London 2012 Olympic and Paralympic Games to create a sculpture. Not to forget his Queens honour too.

Read more and listen to the podcast.

Sunny Rehabilitation at VinterSol

For regular readers of my blog, you’ll know about my love affair with Tenerife. On my recent trip I obviously experienced the old favourites. The warm sun, the sea views, the vibrant surroundings. However I also experienced something completely new. You’re going to be as surprised and delighted as I was!

Vintersol rehabilitation clinic is situated about as close as you can get to the accessible beach – playa las vistas. I’d zoomed past it on many walks before, and wondered what was happening inside. After all, a clinic on the beach front had some mystery around it.

After a good flight and accessible transfer from Tenerife airport, Kasia and I checked in to the hotel. Our first impressions were really positive. It was bright and open. Everywhere was wheelchair accessible. The staff were very welcoming.

Our room had a ceiling hoist that lifted me up and down, moved left to right, and down the length of the room. In essence the hoist could reach every part of the room. The beds were electric. In the bathroom there was a spacious wetroom shower. I’d brought my toilet/shower chair, but Vintersol provide them also. Even the sink and toilet could be lowered and raised by hand controlled buttons.

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Amy’s Blog

We are delighted that Amy has agreed to share her blog on this website.

I’m Amy! A 20 year old woman from the UK, and I was born with PFFD (Proximal femoral focal deficiency). I was also born with only 4 fingers on each of my hands – I’m missing my pinky Amy's Blogfingers.
I created this blog to hopefully give an insight into the life of living with this deficiency and being an amputee.
What Is PFFD?
Proximal femoral focal deficiency (PFFD), also known as Congenital Femoral Deficiency (CFD), is a rare, non-hereditary birth defect that affects the pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both, with the hip being deformed and the leg shortened.

Because of this condition, I personally have had to wear a prosthetic leg from birth, and undergone operations to fix the deformed leg including having the foot amputated.

I was born with PFFD in my right leg – I had hardly any femur(almost none-existent), & I had the symes amputation and knee fusion when I was 8 years old to get a better prosthetic leg. I have been visiting the same rehabilitation centre for 19 years!

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Phil Friend – Difference Is Your Asset

Over the years I’ve met a lot of people working for accessibility, equality, and inclusion. Most are either disabled or have a close connection to disability.

Martyn Sibley - Travel
Martyn Sibley

To say that everyone is so friendly and nice sounds insincere sometimes. But it’s so true in this community. Even when funding or market share matters, everyone still helps everyone. I suppose that’s what you get with a social mission? Who knows.

After the success of my first podcast with Sarah Storey, I was less worried about getting guests. Thankfully. Anxiety and stress are never worth it anyway. However I wasn’t sure who to invite on the show for episode 2.

I started thinking about the issues disabled people face at the moment. One huge area is employment. It signifies our value to society. Our contribution. Plus employment underpins our financial independence too.

Read more and listen to the podcast.