During some recent discussions, I realised that the positive impact of my being disabled, living life to the full and not dwelling on the ‘cannots’ can also be misconstrued. In my next post I am going to explore disability as a social problem, lay out my proposed solutions and show how we all play different roles in this (disabled or not!). However, for today, I want to address the point that sometimes I make living with a disability look ‘too easy’.
Some disabled people may assume that I must either not be that ‘disabled’, have had some sort of extra help in life (financially or otherwise) and just swan around the world with ease. Meanwhile, non-disabled people may think there can’t be a social issue for disabled people – “just look at Martyn, he seems to be doing fine”.
Whenever someone blogs or shares their life and opinions, they open up debate and also they open themselves up for criticism. Do not get me wrong, this post is not off the back of hate mail by any means, in fact the blog and Horizons feedback is awesome! I am just aware enough to know what the potential drawbacks of my ‘message’ are, and want to tackle it by sharing a little bit more of myself than normal.
See, I am great at sharing outcomes – my work exploits, leisure activities and world travel adventures – but I find it harder to share my physical limitations and the complex inputs that enable me to live the life I do. This simply is because I just do them. So, to illustrate my ‘disability’, to confirm how nothing comes that easily and to show you that anything is possible; here’s a day in the life of moi!
8.30 My Personal Care Assistant (PA) comes in to wake me, rolls me onto my back, lifts my arms above my head for me to stretch and goes away again for 10 minutes. You see, I am not a morning person at all! 8.30 is the time I attempt to get up on weekdays, but since self employment I can grab a bit more sleep and work later if I so choose, plus I’m more productive later on. On weekends it is probably more like 11am when I rise!
9.00 Having used my wee bottle in bed, had my underwear and trousers put on me, and been hoisted into my wheelchair; I have my top put on and I’m good to go. I take the long commute from my bedroom to the kitchen/dining room/lounge area (here’s a video tour of my flat). My ebook ‘the disability diamond theory’ partly covers the struggles of securing an accessible/affordable flat, but I got there in the end and love my place. I don’t do breakfast as I never feel hungry first thing, but I have my necessary cup of tea.
9.30 I log onto my laptop and begin work. Nowadays ‘work’ is ‘inspiring, informing and changing the world for disabled people’. As you can imagine, it’s very rewarding, fulfilling and motivating. I start by checking my emails, twitter and facebook messages. I have become such a social media geek!
10.00 My PA will pass me my toothbrush. I do this myself, but have to be at the table and spit into an empty cup. When my arms are supported I can eat and drink easier, but when they are not; reaching my mouth is difficult. Once I have sorted my pearly whites, my PA washes my face for me and sorts my hair out with water, wax and sometimes hairspray – yep, I am vain!
10.30 I head off with my PA in my adapted car which I drive to meet a man about a dog. At present I run my blog, Disability Horizons online magazine, webinars for disabled people in partnership with charities and councils, and undertake speaking, workshop, training and consultancy projects on disability and/or social media. This meeting will most likely be in London, but sometimes I travel all over the UK by car or train. My PA always comes with me.
12.30 Time to grab some lunch! I am a fussy eater which leans more towards unhealthy snack food, though I am trying to improve this as I head towards the 30 year age mark. Therefore my PA will help me get my money from my wallet, pay the cashier and carry my food to the table where I do the rest.
13.30 Back at my flat now and it’s time to check in with my family, friends and any personal chores on my to-do list. This might be a catch up with mum, a note to my girlfriend, a few texts with the lads, and some care admin. Running a team of PA’s means I am responsible for their rota (the days they work), paying them each month and generally ensuring they are happy with their job. If they are unhappy, leave or unable to work then my day will look VERY different.
14.30 Onto 2012 plans and I am planning a trip away in the new year. These days I have to really watch the pennies after starting a new business, but equally every travel adventure does provide great content and networking for potential work projects. For example the company in Tenerife who provide me with a hoist and accessible airport transfers are interested in partnering on a disability travel project. So, at this time I may be booking flights, ensuring the airline know my needs, hiring a hoist at the other end and daydreaming about some winter sun. I am not a fan of the cold or dreary days!
15.30 I am back on emails, twitter and facebook. Then I might contact some potential writers for the magazine and edit a first draft of a new article. I’ll email Srin some Horizons news and then we’ll speak later when he’s out of the office too. I will have radio 1 or mtv base pumping in the background whilst I write an article such as this for my personal blog – www.martynsibley.com.
16.30 Throughout the day my PA’s will have helped me to the toilet, made me a drink and enabled me to do a variety of other tasks. At this stage I will ask them to carry out some domestic tasks such as cleaning, washing clothes and helping grab food from the shops.
17.00 Shower time… My PA will help me undress, hoist me onto the toilet and then onto my shower chair. This chair sits cleverly over the bath, there is an area cut out of the baths’ side for the hoist legs to go under and essentially I can get a nice shower. My PA’s have to help me wash everywhere, just to illustrate how weird this was for the first few times. I am now used to this of course, but having a new PA takes a while to feel comfortable again.
18.30 Having eaten I will take a stroll/wheel down to my local hang out. I love Stoke Newington because the people are cool, the food tasty and the pubs have character. Over the past 4 years, it has definitely become my local amongst the vastness of London’s diversity in hangouts. Sometimes my PA will come too and other times the friend I go with is happy to help me get a drink. I also occasionally use a bag enabling me to pee freely without assistance for a few hours. It is like a catheter but doesn’t go inside your fella, if you get my drift (just ask if you want more info, but please no weirdo’s).
21.30 I meander my way home feeling merry, tipsy and content. I have been blasted at once with a police siren for cruising the bus lanes whilst a mate hitched a lift on my wheelchair. Of course, those days are behind me now 😉
22.00 I have an enjoyable catch up with my beautiful girlfriend on skype and discuss our day, plus what we will do next time we see each other. In checking if she was happy to be mentioned here, she requested lots of positive comments about Edinburgh (near her hometown) and Scotland generally. Does this comment achieve that?! 😉
23.00 I get hoisted into bed, raise the head on my bed up to watch some tv and then try and sleep. Often at night my brain goes double speed. I have my best ideas now and lie awake planning projects, ideas and articles. I often need to turn over before I sleep, so I use my mobile phone to ‘miss call’ my PA who comes from the spare room to help. I will also require this a few hours later.
So that’s a day in my life! I hope that this is a helpful and informative outline of my world at present. Clearly on weekends I may go and see family and of course I have my travel trips, but you have read these already. If you have any feedback, comments or questions do not hesitate to get in touch here