Month: April 2019

I’m often asked how I manage to do so much, or receive glowing compliments about being a “such a trooper” and the amount of achievements accomplished in the five years since I started writing. There are no easy answers and many variables that a physically disabled writer with a degenerative spinal and auto-immune joint disease has to contend with. This blog is too short to elaborate on the constant hurdles but I hope some of this will resonate with other physically disabled writers, whether living with ‘invisible’ conditions like MS, ME, auto-immune conditions, chronic pain or the loss of mobility that are immense physical impediments to accessing the mainstream literary industry. Perhaps these words will give courage to persevere and not lose hope. Because like any other wordsmith, I’m compelled to put those words on paper and no matter the stops and starts, the immense obstacles involved, I am a Writer, capital W, not wanting to be defined by my disability, my mixed Anglo-Indian heritage and neuro-divergence (synaesthesia), but by the quality of my work. The only definition I will accept however is a Writer who translates many personal experiences and those of women around the world who I have had the privilege to meet and listen to. Their conditions and struggles affect me deeply due to heightened empathy from synaesthesia.

So, how do I manage when my degenerative condition varies from day to day; when I live with chronic pain and increasing physical limitations on mobility, when daily tasks are difficult to assume and energy low along with managing chronic pain? Hmm, once again no simple answers apart from no longer reading all those tips on “how to manage your writing day” etc. I’ve tried everything and they certainly don’t apply! It’s mind over matter, respecting your own physical limitations and I do what I can, when I can, though the following hurdles are some of the barriers that make it much more difficult and frustrating for me or anyone else with a physical disability to break through and be published in my own right.

The literary industry in general wants us to participate in events, festivals and etc. “Jump the slush pile”; “build networks with agents and other writers”; “get out there, be seen”.

Well, that’s me out, along with other disabled writers stuck in their garrets pouring their hearts out by candlelight because we can’t afford electricity! Much has been done over the last couple of years to facilitate access for under-represented groups, the latest being working class. But nothing is available for disabled writers in the mainstream. In four years of toddling to events with first a walking frame and then confined to a wheelchair, I have only ever counted three writers “on wheels” and I’m one of them, which makes me think that a talented author on the cusp of publication is a rare breed faced with extinction…

Here are some of the impediments we are faced with:

• Disabled Access – Not just door widths, steps, easily accessible and appropriate facilities but also transport – including additional costs. For example, obliged to use taxis instead of the Underground and paying for a support worker. Costs are doubled especially if overnight accommodation is required even if free low-income tickets are available.
• Ten minute coffee breaks and half hour buffet lunches – please no! By the time we have found and used the disabled toilets, we usually don’t have time to grab something to eat and there’s no discreet creeping into the back rows in a wheelchair. Time out to regain composure and energy are vital as well. Anyhow, there have been recent general discussions (and my many vociferations) about making events more accessible and improvements are being made, but I can sincerely say that of the various events I have managed to attend, The Literary Consultancy and the Free Word Centre are quite simply the best, offering utmost kindness as the cherry on the cake.

Next,

• Low income – many disabled people now live on the breadline with decreasing benefits. Lack of finances usually implies less food, less everything which can impact health, morale and motivation. How to pay for competitions, event attendance when your energy is consumed by day to day niggles about money? I personally have enough willpower and self-control to compartmentalise as much as I can, though disability and benefits do mean mountains of admin and immense frustration. So I shut out everything else until I physically drop and you have to scrape me off the sofa; then collapse for a couple of days and potter indoors while trying to catch up on everyday telephone calls, paperwork etc. Then back to writing or editing. I sometimes think this is alike to a self-imposed masochism as I push physical and grey matter boundaries in an attempt to keep up with the mainstream.
• Isolation – For many of us, just getting outdoors can be arduous for various reasons, including previously stated financial issues. Finding and joining a writing group is great if you can get there, if they exist. There’s not much going on in my city and there are no easily available accessible taxis, so I’m stymied on that score. Friends and family, a proactive network around us for moral and physical support are essential too – which I do not have, alas. It saps morale, motivation and inspiration when staring at the same four walls day in, day out.

So, to sum up – I unfortunately tick every hurdle box but which in turn, gives me incredible insight into what should be done to increase access and the kind of invaluable support TLC offer me as a Chapter & Verse mentee. I am still here, plodding along at a reduced pace but with oodles of work to be written if the right living, support and financial conditions are met, which is why I have taken the decision to embark on a new ‘journey’ creating unwanted but necessary upheaval. More about this later and hopefully I will come out the other side with a potential memoir under the belt, provisional title – “How Writing Saved My Life but Nearly Killed Me” – joking here! If not, I will carry on fighting to my last breath and words against perceptions, labels and refuse to be defined by my disability. Ignore the wheels below the waist, please, and look at the quality of my work and efforts first! Give people like me a chance to break through despite our ‘invisibility’. I have to write. It’s not cathartic, it’s imperative. Stories, novels – they are all films stored in my hard-drive of a brain, to be switched on, off; wind forward, rewind, waiting to come out. I am a Writer, capital W.

Why raise money for a trip to Lapland, Finland, when all I need is the special wheelchair, some may query. Because the Four X is part of my “journey”. This is not leisure or pleasure, though I will evidently have moments of gratification; this is not a “vanity project” but integral to what I need to prove to other physically disabled people and writers and in my case, the literary industry, that we are just as capable as others; this is to show and document what perseverance, sacrifice and dedication can do – open doors, break down the barriers of perceptions so others can take hope, courage and belief in their own potential and dreams.

I have to mention that everyone has a bucket list, don’t they? Mine is dwindling as years go by. Even if I manage to raise enough money for my Four X off-roader, places like Petra in Jordan are disappearing into a utopic distance and let’s not even talk about Machu Picchu or the Himalayas. Many of my dream destinations will still remain inaccessible geographically and financially of course.

There are several reasons to go to Lapland apart from the fact that the Four X is manufactured by a Finnish company and that I have always dreamed of snowy expanses of forest and frozen lakes in the dead of a dark winter. I want to see the Northern Lights, to marvel in the wonders of the universe, my eyes turned to the stars and indigo sky surrounded by the muffled silence that only deep snow brings. I have always loved wide, empty spaces where I can connect with the universe and nature, replenish my body and mind, and fill my synaesthesia senses to the brim, burst with creativity and a trillion words. I also love connecting with other cultures, their oral storytelling traditions too and the Sami people hold a longstanding fascination.

Going to Lapland will be the culmination of my journey from start to finish – from the moment I took the difficult [and terrifying!] decision to leave my home and begin a new life elsewhere, to the end of my trip to Lapland where I will finish my novels and story collections before beginning a new cycle in my life. Three weeks of silence, rest, to produce new writing and complete work in hand. Three weeks of utter freedom from everyday struggles. Three weeks of joy.

Lapland is my writing retreat, a place to refill energy and creativity, be inspired, build up strength and health – and have a bit of fun for a change. Can’t wait to trundle off into a snowy forest with my Four X, throw myself into deep drifts and make snow angels, as long as someone is there to drag me back up! And of course, saunas with maybe a rapid dip in freezing waters afterwards? Beat me with those birch branches, baby!

We have all gone travelling, haven’t we? Whether on a package holiday to relax, rest and forget daily stress, or with rucksack and a map in hand for adventure, most of us seek out the joys of a holiday at least once a year. The internet offers a plethora of deals; hotels, cheap short breaks, last minute or other. So easy to choose online, book, pack a suitcase and hop onto that cheap flight to wherever the fancy takes you. Not for us physically challenged travel customers.

I have not only experienced first-hand the joys of being a disabled traveller but the psychological blockage of not wanting to go through it again. The frustrations too of having an NHS provided electric high-backed wheelchair that doesn’t negotiate bumps, kerbs, hills or uneven terrain. One compensation is the support seating and tilt mechanism which certainly helps when waiting three hours at an airport before boarding. You see, I suffer from degenerative spinal and joint disease and chronic pain. Four operations on the spine, not getting any better, and sitting upright or standing are very difficult. But it doesn’t prevent me from wanting to travel and have the same opportunities as other more able people despite the difficulties.

I’m a writer/author, a creative who seeks inspiration and breaks from daily struggles with very little support. I’m also someone who loves other cultures and although limited in resources, wish to spend a little on going places. But no cheap options for me, I fear. Nor for other disabled people who require the assistance of a carer. When you hop onto that plane for your cheap(er) holiday or break, remember us and the additional expense when, in general, already on a low budget –

• No travelling alone so have to pay double for a carer to accompany.
• I live in an area with difficult rail access to airports so have to pay for a disabled taxi transfer – £95 each way. Add that onto the final bill! So a holiday package that usually costs say, £600, comes in at around £1,500!
• Transfers on the usual coach are out of the question. Majority don’t take electric Powerchairs like mine. So we have to pay extra for special taxis from airport to destination. E.g. I once paid €280 return to get to a resort only to find I couldn’t access half of it because of steps everywhere.
• Accessibility – Lesson learned. I now Google resort distances, accessibility and play around with Google Street View for hours trying to find a suitable holiday or hotel. Emails direct to hotels and resorts as well. So many hours spent in organising, phoning, checking. No hopping onto any last minute deal for me!

 

As you can see from the above, and that’s only the tip of the logistics iceberg, it is tiring, stressful and frustrating from the start! Ah, but the actual travelling? Oh the joys, or nightmares…

Here are some of my experiences, stressful when happening but I have to look back on them and try and laugh. Well, I try. Because if I rant sometimes, it’s not about what happened to me, but WHY it happened. About how we are treated like pariahs, inconveniences; how there is often a lack of respect and consideration. Not everywhere or from everyone, because there are some lovely people out there who make it all worthwhile.

• Booking in: We are asked to arrive at least 2 ½ hours early so as to ‘book in the wheelchair’. Running around from one point to the other with staff of some airlines completely clueless about where, what and how to do things. Disabled assistance can be patchy, staff overworked, sometimes only half an hour left to grab some water, food in duty-free lounge.
• Time since leaving home – 3 to 4 hrs
• Stress levels – 5/10
• Pain, exhaustion (and thirst) levels – 6/10
• Security: Despite disabled assistance which should mean priority and ease, it can be hell on earth; asked to get out of wheelchair, stand without cane, no support and told to walk through the detector. I always buzz, without fail which makes me wonder whether the spinal surgeon hasn’t left something metal in my body! Frisked while standing, still no support, wobbling, legs giving way, increased pain. The worse is when fully frisked, with security officer lifting top up, baring midriff and bra in front of all the passengers. Inevitably separated from carer, by the way. Then left to hang onto side of conveyor waiting for my tray to go through, all alone to put everything back on, including back brace, and pack everything all away again.
• Time since leaving home – 4 to 5 hours
• Stress levels – 7/10
• Pain, exhaustion (and desperate need for the loo) levels – 7/10
• Boarding, getting into and off plane: More often than not, we are the last to embark and disembark, adding extra time to the journey. Often find the locker above my seat already full of other passengers’ items. Handbags and small bags that could go under seats take up space for my cabin bag which has my precious writing, laptop, camera, valuables. Cabin bag once shoved at the other end of the plane…anyone could have pinched it. I once waited 45 minutes in the plane for my Powerchair to be brought to me so I could disembark. Found my luggage doing a solitary roundabout on the carousel. Once again, anyone could have pinched it…

Twice I have had to virtually crawl up stairs from tarmac to aircraft despite having booked the lift vehicle. Compensation was offered by some rather handsome and rugged Greek and Spanish luggage handlers courteously manhandling me up them.

• Time since leaving home – 4 ½ to 6 hours
• Stress levels (now in my seat) – 8/10
• Pain, exhaustion levels – 8/10

Pops a painkiller, has an alcoholic drink, sits through journey with bags on lap or under feet, unable to shift, move my limbs, find a comfortable position. Stares out of window and watches clouds go by in an attempt to block out the increasing pain and exhaustion.

• Regularly and here I will name names, my 3-wheeled, foldaway walker has been twisted, broken, a wheel sheared right off at Gatwick on return journeys. Thank you handlers. Also, and once again, depending on airline, almost always end up last out of the luggage carousel area because I’m waiting for my Powerchair which inevitable comes back with damage. i.e. Left on tarmac for 45 mins in pouring rain. Memory foam seat literally soaked, unable to use because of water on cables and in batteries; another time and for some weird reason, the command arm was dismantled, unscrewed and left on the seat for me to sort out on the tarmac. Screws missing, cables unplugged and luckily the disabled assistance guy found a screwdriver and some duck-tape.
• Full journey time: average from my home to resort/hotel and same for return, discounting any delays – 9 to 12 hours depending on flight.
• Stress levels – 10/10
• Pain, exhaustion, thirst, need to visit WC – 10/10

So there are a few examples of what it is to travel as a disabled person in a wheelchair. I have left out all the little details and could write pages on a single incident and maybe I will. People who have accompanied me couldn’t believe what we go through and have said I should write about all this, especially as you need to be stoic, courageous and sometimes loud-mouthed to go through the hoops, hurdles and obstacles. As one friend said to me – “Lynne, I don’t know how you do it. But as always, your self-deprecating humour shines through.” There perhaps lies the answer, despite being stressed out at times? In any case, compensation at the end of each journey is the right to enjoy a holiday like anyone else, laze in the sun, pool, on the beach – and for me, to take time out to write, write.