The biggest drawbacks
to my writing life are,
unsurprisingly, pain and
fatigue. Hours
sitting at a desk is exhausting and painful
Nydia Hetherington
Living with chronic illness, the biggest draw- backs to my writing life are, unsurprisingly, pain and fatigue. Hours siting at a desk is exhausting and painful.
What is your writing process and has it changed as a result of your disability? Pain and severe energy impairment led to me being unable to draw, hold a pen or tpe. At first, I used a digital dictaphone, which had to be transcribed. I now write using voice-to-text
assistive technology (AT), and help from my carer. With energy impairment, AT isn’t necessarily the answer because I can’t always speak, so I’m not as productive as I’d like. My aim now is to be the Tortoise, not the Hare, and the “write every day” maxim has become ashes in the dying embers of my internalised ableism (discriminatory prac- tices and beliefs against disabled people).
es an a d
I type with one hand. I could use dictation soſtware and I have tried but, weirdly, it doesn’t quite work for me. I lose something in the process of geting from brain to page.
Perhaps the act of physically tping makes my imagination work harder.
a
I’ve invested in all manner of gadgets to help with sitting at a keyboard all day. Nothing works. So, I plod on through the pain and fatigue until I need to stop. That’s the only way
for me to get my writing done. I’m used to pain, it’s a constant. So, I accept it and deal with the physical and emotional ramifications.
How d ow do you navigate the publication process?
What are the biggest obstacles you have faced in your writing career?
your
My début graphic memoir coincided with a severe deterioration of three chronic condi- tions, and I became disabled and, eventually, bedridden. This presented a problem for book
publicit. I had been looking forward to new opportunities but was able to atend only two events in person that year. As well as the publicist’s work, the good will and enthusi- asm of colleagues and peers in my absence was important. However, accommodating Disabled and Chronically Ill (DCI) authors should be integral to the industry, rather than authors having to “overcome” illness.
an aut u
I have a neurological condition called dystonia as a result of a childhood brain haemorrhage, which has recently been exacerbated by a very unlucky fall. The biggest challenge for me is the choice between walking or writing. If I take too much medication, it messes with my head and I can’t write. If I take too litle, the pain and spasms in my right leg become unbearable and I can’t walk. I have found an acceptable level of pain I can work with, and in time, I will get used to it and it will become discomfort rather than pain. This isn’t my first rodeo.
TheBookseller.com
My latest publisher was aware of my illness before signing the book, so I felt comfortable discussing any needs and negotiating dead- lines. There was a healthy mixture of profes- sionalism and mutual understanding. Years ago, I was reluctant to be public about my illness because I experi- enced an incident of ableism while freelancing. I’m open about it now and have found most other professionals to be amenable, although I’m apprehensive about whether this will affect future publishing prospects.
ll affec
I was reluctant to be public about my
illness because I experienced an incident of ableism while freelancing
Paula Knight
I have had to ask for concessions—taxis instead of trains, wheelchair transfers through airports, ready access to a seat at all times, no high stools on a panel interview, etc. This isn’t easy when
you are new to the business because you don’t want to be seen as demanding, but the things I ask for are necessary, and I have found that once the people concerned under- stand why you are asking, they will go out of their way to help you.
ou
Being a début author, I had no idea what to expect from the industry. In fact, as with most things I expected very litle. To be fair, this was not the fault of publishing, but rather the diffi- cult I have talking about my condition. I have Rheumatoid Disease/Arthritis, an autoimmune disorder and one of the oſten-referred-to “invisible illnesses”. If I don’t tell you I’m in pain, then the chances are you won’t know. As I’ve got to know my publishing team, I’ve spoken more openly about
11
Page 1 |
Page 2 |
Page 3 |
Page 4 |
Page 5 |
Page 6 |
Page 7 |
Page 8 |
Page 9 |
Page 10 |
Page 11 |
Page 12 |
Page 13 |
Page 14 |
Page 15 |
Page 16 |
Page 17 |
Page 18 |
Page 19 |
Page 20 |
Page 21 |
Page 22 |
Page 23 |
Page 24 |
Page 25 |
Page 26 |
Page 27 |
Page 28 |
Page 29 |
Page 30 |
Page 31 |
Page 32 |
Page 33 |
Page 34 |
Page 35 |
Page 36 |
Page 37 |
Page 38 |
Page 39 |
Page 40 |
Page 41 |
Page 42 |
Page 43 |
Page 44 |
Page 45 |
Page 46 |
Page 47 |
Page 48 |
Page 49 |
Page 50 |
Page 51 |
Page 52
