Most 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.
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.
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.
Hi everyone! Today I’m going to be talking about how to prepare for a hospital stay.
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!
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
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.
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.
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.
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.
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 fingers.
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!
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.
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.
He went above and beyond the call of duty: using mostly obscured glasses to get a better idea of cooking blind like me. Brave to try in the first place, braver still to do it on camera with a silly nose too– what a star!
We raised over £150 with our American-themed bakes: chewy chocolate cookies, wicked pecan pie, sesame bagels plus more English trays of flapjacks. Heaven only knows how many calories went in to it all!
These are all straightforward bakes although measuring syrup and handling a pastry case full of sugary mix are both hazardously sticky if you’re blind. I should have weighed out the balls of cookie dough in to more consistent sizes – but they still tasted good.
Since I started blogging and running Disability Horizons, I’ve recorded a few podcasts. It was with basic technology. But it was nice chatting with friends about disability issues and beyond. I’d never considered interviewing hugely successful disabled people until…
Welcome to The Martyn Sibley Show!
As you know I came third in the ‘Power 100’ list of influential and successful disabled people in December. It was great to be personally recognised for my work. Most of all I read about many amazing people and thought…
What if I started a podcast where I interviewed these awesome humans. Would they accept my invitation? Would I grasp the technology? Would anyone listen?
Well. Here we are. I’ve already recorded four interviews. The guests are coming and the technology worked. Now it’s time to see if you like it.