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
I know you already know this, the thing about disability is that one size never fits all. I don’t think you’re “more” or “less” disabled than me, but I do think that, compared to the next disabled person, there are some areas where you’re ahead of the game and others where you’re not.
So while I get the importance of putting forward a positive image about how well you manage, you do then become a bit of a stick to beat some of the rest of us with. And if we say “no, my brain doesn’t buzz when I go to bed, thinking is like wading through treacle, and I cannot safely drive a car, and I don’t get PA support with housework so it often takes me all day to do one lot of laundry and last night’s dishes, and I need several naps during the day,” we get compared to more mentally active, energy-filled disabled people like you and told we’re just not thinking positive!
The problem isn’t really how you do or don’t manage XYZ task. It is disabled and non disabled people who can’t grasp the concept of illness as opposed to mechanical impairment. No amount of positive thinking or reasonable adjustment in the world will make me able to remember my name when I’m semi-conscious, if you see what I mean.
Hi Mary
Thanks for your comment. My only ‘defensive’ comment is this article was purely a personal account of how I manage, with no negativity intended to people with impairments such as yourself. Your comment about ‘the rest of us’ does then detract from the many people who’s impairment is similar to mine, and arguably the audience I am hoping to resonate with. This notion of disability segments can become divisive and whilst one size does not fit all, surely some common values exist and showing the world positivity with disability is ok – even if it shouldn’t be applied to all?
However, I totally see your point and agree that anyone looking at my personal situation should not apply that to all disabled people. I am hoping to get that across in the next post I mentioned – called the disability jigsaw puzzle.
I used to feel frustrated and offended when my blogs or comments were misunderstood or applied incorrectly. Now, I am glad to debate the issues, learn from them myself and hopefully enable someone like your good self to promote other experiences to my audience. If you ever want to write a guest post on the difference between illness and mechanical impairment I would love that?
Thanks again for taking the time to share your thoughts and I apologise if I am inadvertently beating you with my stick like features :-p
Take care,
Martyn
Hahaha, *you* aren’t beating me at all, your Stickiness (grin). Please rest assured, you did make clear that you were just portraying your own experience and weren’t being negative towards anyone.
However at the beginning of the post, you mention that it was inspired by people discussing with you the issue of you “making it look too easy.”
What I think this is connected to, is the immortal line “(Insert Public-Facing Positive Inspirational Disabled Person Here) can do (activity), why can’t you? You just have to be more positive!” which is a line that I and others have heard So! Many! Times! from relatives, from taxi drivers, from work connections, from online contacts… they email us articles like yours and if we point out that (for instance) doing this many things in a day is beyond our capability, we’re told off for being negative.
You see? *You* aren’t having a go at anyone. But *other people* are using examples like you and your success to enable themselves to have a go at me, and people like me.
It’s a bit like getting a B in school and your classmate Fred getting an A, and your parents saying “Fred got an A, why didn’t you?” It’s not Fred’s fault, he’s done nothing wrong, quite the opposite, but it takes a very strong person not to feel a bit irritated with him!
I don’t have an answer to this conundrum. Certainly I don’t think you should be less positive or energetic – that wouldn’t do anyone any good. I just wish we could find a way of getting it across that part of being positive about what you *can* do has to include being realistic about what you cannot, and that this realism isn’t (or at least isn’t always) “negativity” or dwelling on the downside.
I’ll be really interested to read your next post.