By Mandy Edwards
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.
Read more blog Posts: April 2017-04-05
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.
So who was Mandy BD? She was a mum, teacher and daughter; a diehard sports fanatic, who worked as a class teacher, special needs teacher and head teacher for over fifteen years. She loved her job and could best be described as quirky, a teacher who would happily stride into class on stilts, juggle balls or mimic puppets to engage her class. Privately she was an independent single mum who thought nothing of redecorating her house or moving heavy boxes. She was proud of her finely tuned body and her physicality was an important part of her identity, both professionally and personally. She had passed on her love for the great outdoors to her son who, in term, had became a gifted tennis player. They shared a passion for adventure holidays, where they would enjoy raft building, whizzing down zip wires and rock climbing. Life was fun, frenetic and quite frankly, fantastic!
Mandy AD was born during a very positive phase of the Edward’s life. My son had just won a scholarship to a good school and I, with usual determination, had sought an alternative professional route. I had left school -based teaching and decided to employ several other teachers and start a home tutoring business for disenchanted learners, particularly those with dyslexia and school avoidance issues. I sold my home and moved lock, stock and barrel to follow my dream and that’s when it happened. A moment of madness. A decision not to employ the archetypal “Man with a van” but transport a few heavy boxes myself. Without realising it I had prolapsed two thoracic discs behind my ribcage and the next day woke up in excruciating pain. The prolapsed discs had triggered a condition called Conus Medullaris syndrome, effectively a dent at the base of the spinal cord. Within hours I was showing the typical ‘red flag symptoms’ of a spinal cord injury, such as leg weakness, pins and needles, numbness, neurological pain and bladder and bowel dysfunction. Despite a dramatic journey to hospital in a flashing ambulance, a series of medical delays meant that the narrow time period to repair the damage was missed and my disability became permanent. The year was 2009 and the cost of that delay life changing for both my son and I. I was unable to walk, manage my personal care and much to my shame, adult pampers were added to the weekly shopping list. My 13- year -old son, always a loving lad, willingly stepped up to help and our roles swiftly reversed as he took on board all the washing cooking, ironing, cleaning and shopping alongside his school work. In typical optimistic style, he quickly identified the problems faced by many other young carers, alerted his local MP (then the irrepressible Norman Baker) and soon began representing their rights across the country. He in turn was nationally recognised and received an accolade of awards (Young Carer Of The Year, Carer Of The Year and Courageous Child Of The Year) in 2012. Disability, an ever -hard taskmaster had shown me and all those around me, that my son was an extraordinarily compassionate and courageous young man. Sadly soon after the awards ceremonies he fell ill with an array of obscure symptoms that took several years to identify as Ehlers Danlos syndrome. It was a genetic disorder that I was unaware that I had and proved to be the very condition that had left me so susceptible to a spinal cord injury. By this stage we were now both ill and housebound and at the bottom of the pit.
With nowhere else to go I turned to Adult Social care and our adventures with various employed carers began. Suffice to say that is a story in itself and one that deserves special mention at a later date. However just to tempt you I’ll offer you a little soupcon. I vividly remember one of our very first helpers, part of an army of carers who would arrive each day to cook our evening meal. David let her in and, after a few clattering pans sounds, I heard her calling him into the kitchen. Curiosity got the better of me and I painfully dragged myself after him (which took me three times as long as my son). By the time I’d arrived I found my 13 year jaundiced son giving the lady a cookery lesson on how to make a chicken curry while she watched from the side-lines. Next week she arrived and this time learned how to make a cottage pie! Needless to say I asked for a cook the next time! However many were kind and without a doubt they arrived at a time when we were a broken family in need of help. Thankfully today we are now whole, glued back together by years of compassion, patience and love for each other as well as from some very unexpected sources along the way. The cracks in each of our vessels remain visible, created from shards of suffering, but now uniquely owned, as each of us plough out our new identities in the world. To this day it makes me laugh that my son is now studying Media studies at university, as during our “ill years”, all we could do was watch films and documentaries together. It seems that all those immobile duvet days have finally paid off!
Disability remains an insightful teacher in my life. I’ve acquired tremendous respect for those living with disabilities. I’ve learnt first hand how much courage and determination it takes each day just to cope with a disability, in a world that appears quick to judge and slow to appreciate the potential in each human being, however challenged they may seem. I’ve discovered that ‘disability’ exists in able- bodied people too, in those unable or unwilling to understand the world through another’s limitations. For me, disability is as much about an attitude of mind as of a physical or mental incapacity. I ‘ve been one of the lucky ones. My son has reminded me daily of my abilities and because of that I am a writer today, physically disabled certainly, but that’s only a part of my life story, right? I’ve also learnt the hard way that, without the right support, disabilities will affect whole families and profoundly limit more than one life. A crucial lesson today when cuts in Adult Social care are affecting so many families.
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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. Last year I faced my seventh spinal surgery, but thankfully the forward thinking hospital staff fully embraced Tally’s role and the difference she made to my recovery was astounding. I had been warned that the day after surgery a team of physiotherapists would be arriving to ensure I got out of bed at least twice a day and that pain would be a necessary evil to prevent further lung problems. During a previous surgery to install Harrington rods (from T4-T12), my left lung had been collapsed to access the thoracic discs denting my spinal cord, but re-inflation had proved problematic and I now had a permanently collapsed lower left lobe. I still remember waking up in ITU later that night in a panic. They were absolutely right, it was incredibly painful, and the thought of moving even a few inches onto the trolley to get me back to the ward was terrifying. Unbeknown to me, my awesome son had already arranged to bring Tally in first thing, and when she spotted me in bed she wagged her whole body furiously in that unique ‘Where have you been all my life?’ canine way and my focus immediately changed. Without a second thought my son and I carefully negotiated the various IV tubes and got me into the chair for my daily pet therapy. When the physiotherapists arrived an hour later their expressions were priceless and the focus quickly changed from getting me up, to walking me down the corridor! Thanks to my furry medic, I was allowed to leave the hospital in half the anticipated recovery time. Animals have an incredible capacity to accept us unconditionally, and Tally has been not only my personal assistant, but also my personal psychiatrist.
Once home she went straight back into what she knew best, collecting my clothes, removing my socks and coat at the end of the day, emptying the washing machine, picking up dropped items, pushing open doors so I could pass through, passing me the phone, collecting the post and stabilising me when out and about. When you watch a majestic golden Labrador pushing her nose determinedly into a washing machine to pick up your smalls with her teeth, and then delicately dropping them in a basket, it changes something in your psyche. It pushes you to try that little bit harder. Hey, if Tally can use her mouth to help me, then what’s the big deal about re-educating slumbering legs? I used to say that when I was with Tally I felt a bit like a celebrity minder and that still stands to this day. People weren’t bothered by my wobbles and stilted movements. That isn’t what got them staring! They were just fascinated by the concept of Tally and from day one she’s got me out there and talking to people again. With Tally I forgot to be afraid of what my body might do or fail to do in public. I just focused on telling them all about her, and my recovery became the positive side effect of that mission. Far cheaper and far more effective than daily physical therapy!
I owned an electric wheelchair in the earlier years, which in theory gave me the freedom to shop locally, but I found negotiating the wheelchair unfriendly local pavements a nightmare. Tally and I literally only had one set route that we could use outdoors to access a local park and that was it. By the time we arrived at the park I would be anxious and exhausted and already dreading the journey home, negotiating one lowered pavement adjacent to a fast -flowing corner for traffic. I wanted more for Tally and me and that’s when the idea first took hold, but I initially rejected it outright. I’d been told my limits loud and clear and part of my recovery was accepting those limits right? Yet Tally and I needed more choices so I persevered. That was seven years ago and today I can finally say that my legs are much more under my control, as long as I respect that their limits, and I’m even the proud owner of a disability car now. Tally literally walked me through those early toddler days paw by paw, and without her I’d not have had the confidence to keep going, as it certainly wasn’t a pretty sight. I was all lurches and lumbers but it’s definitely been worth it. That wheelchair has finally been relegated, replaced first by a walking frame and then by a tripod walking stick. Without Tally I’d had given up pretty quickly, but with her beside me I knew the world would understand my struggle. And I was right.
That wasn’t the end of Tally’s contribution to my recovery. I was so impressed with my furry physiotherapist that I wrote about her for a dog story competition in 2011. She won it, and that year was named Dog of The Year by the magazine Dog Training Weekly. We were even offered a slot at Crufts to formally accept her award, but sadly I still wasn’t strong enough to travel up north, so Canine Partners accepted it on our behalf. However I began writing a monthly article called Tally Talk for Dog Training Weekly, and the readers went on to raise 10K for Canine Partners (www.caninepartners.org.uk). That’s roughly the equivalent of half of a Canine Partner for another disabled person, as it costs the charity around 20K to train each dog and owner. I bags the back end every time. After all it was that wagging tail that got me through some of my toughest spots!
After Tally Talk, writing became my go to place, where I could feel connected to that part of Mandy BD that I really missed. As an ex teacher I was used to helping children and parents en mass and I sorely missed my giver role. My years of rehabilitation seemed to have robbed me of that capacity and I struggled silently with despair, too embarrassed to admit how I really felt. A friend then bought me a book called Joni, by Joni Eareckson Tada, and that book literally changed my whole outlook. Joni was a 17 -year -old American girl when a diving accident left her quadriplegic, frustrated and bitter. Yet she went on to become a talented artist (using her teeth), prolific author, radio host and founder of Joni and Friends (www.joniandfriends.org), a Christian organisation for the disabled community that provides wheelchairs to some of the poorest communities in the world. After a few hiccups in her early recovery, Joni came to view disability as a climbing frame, rather than the brick wall, and her writings encouraged me to do the same. I saw professional writing as my ultimate prize and began in earnest. It’s still very early days as yet, as I produce published short articles for specialised markets but I’ve got big plans for my future! I’ve already written three quarters of a Sci Fi book for teenagers, started during the days when Sci Fi and Fantasy films became our new sport when my son and I were both housebound. I have also completed an autobiography of my journey so far, which I hope I can find a market for once My Sci Fi book succeeds. Climbing frame not brick wall right! Joni changed me whole view of disability, and I want to be able to pass that favour on too.
Since my own changed status from able bodied professional to disabled woman undergoing treatment, I’ve noticed a growing trend in society to undermine the needs of, and discount the potential in, disabled people; from the cuts in social care budgets and mandatory re-assessments of financial needs for those living with incurable conditions, to the media emphasis on disability cheaters rather than disability life -changers. Some of my more recent dealings with Adult Social care would make your toes curl, but that ones for my next blog! Not as a rant, just an example of the hurdles now being placed in front of those doing their very best to manage both disabling conditions and a way to contribute in the world. I’m fortunate in that my earlier profession gave me a voice but it haunts me that there are those out there who are suffering in silence, and I know I have to speak up for them. I have been inspired again and again to aim high by a plethora of extra-ordinary disabled people out there today, but I would hazard a guess that many of the public would neither recognise their name or their achievements. Sure there are those that we all know and love, but many remain silent witnesses to the courage of human endurance and endeavour. Here are just a few examples and I’ll begin with some of the famous ones! Professor Stephen Hawking, ALS sufferer and theoretical physicist and prolific author. Heather Mills, amputee, businesswoman, activist and fastest disabled woman on the planet! Helen Keller, blind and deaf, and lecturer and activist. John Nash, Schizophrenic and renowned mathematician. Christy Brown, cerebral palsy sufferer, poet, painter and author. Sudha Chandran, amputee and acclaimed Indian dancer. Marla Runyan, blind, professional runner, five times gold medal winner and author. John Hockenberry, spinal cord injured, journalist, four times author and Emmy award winner. Jean-Dominique Bauby, Locked –in Syndrome, journalist, ex editor of Elle magazine and two times author since disability. My personal favourite of course has to be Joni Eareckson Tada! The list remains endless. Film such as The Theory of Everything sends out powerful and positive messages about disability. Professor Hawking may be seriously disabled but he has a ferocious intellect and is a sound reminder that we are so much more than our physicality. It frustrates me intensely that the media often seems to have a very different agenda around disability.
I hadn’t been able to write for ages as my peace of mind has been sorely tested by neighbours “renovating” their adjacent terraced property for more that six months. This was to be the year we would start taking in language students and I began tutoring but alas our home is no longer user friendly as our sound resistance has been massacred. We now get to enjoy their daily sounds from 06.30-11.00pm (from showering, toilet flushing, sweeping, talking, laughing, dancing and music) at the weekends, and daily drilling and hammering during the week while they are at work. To give you an idea of the paucity of our new sound resistance, after a very loud social last Saturday night, the male of the house belched noisily in his bathroom at 1am (next to my bedroom) and advised all who could hear (me included) that “a mans gotta do what a mans gotta do!’ Arrgh! Really? So anyone out there who could advice me on this matter would be greatly appreciated! Unfortunately Building Control advice me that due to “issues with resourcing” they cannot help! So any advice would be gratefully received guys! Anyhow on that particular drilling day my carer and I couldn’t hear each other speak over the drilling and all I wanted to do was express my fury. Unfortunately my timing sucked and I followed through at the exact moment that the drilling paused, and my poor carer nearly hit the ceiling. I’d never screamed before and it now felt too much for both of us! After apologising profusely, I clicked open my emails and in that moment everything changed. My inbox contained an email from a partially sighted disabled Italian man called Carlos. In broken English he told me how he had suffered from anxiety, depression and insomnia for 35 years, now lived in a home for the disabled, and felt friendless and alone. My Easter blog had ‘touched him deeply’ and convinced him to see himself in a more compassionate and positive light. To be honest I still have no idea what I wrote or even where and when I wrote it, but the thought that I had been able to reach out to a traumatised stranger lifted my spirits no end and got me back on track. Disability has taught me an important lesson. Each of us have a unique place in the world, from being front of stage famous, to changing the belief system of one lonely stranger and all of our roles matter to someone. For me the key is happiness has been discovering what that role is and accepting it wholeheartedly. I found a love of writing and if I can change at least one person’s view of life for the better then it would have all been worthwhile.