Hacking Tiredness – more energy than I think

sleeping catI can get tired easier than most people because of my extra movements and just generally the extra effort I need to put into everyday tasks. Tiredness is annoying, it gets in the way of, well, life really!

However it was brought home to me today how much I can recharge my batteries just by having a little lie down.

My sister and my young nephews had been up for a “sleepover” and the boys were full of beans and the youngest wanted constant fun interaction with me all day. I wouldn’t have had it any other way, I adore them and I adore the way they love me so much and are full of hugs and cuddles for me. However by the time they’d left … man, was I tired!

I decided to cancel my evening out, even though I really wanted to go. Then I thought hang on why not text my friend again and say, “hey, can I see how I feel after a kip and let you know.”

So I literally just curled up for half an hour and let my body have some “time out” where it wasn’t fighting gravity, when I didn’t have to ‘do’ anything, just ‘be’. I tend to forget my body uses up for more energy than most but when I’m lying down it is completely still and I have opportunity to recharge. I felt loads better afterwards and my energy saw me through the evening … and now I’m awake typing this at 23.40 so  I really must go to bed now.


Driving

lady drivingb carLike most people reaching 17 years I was eager to learn to drive. I wanted to go where they want to go, CP has never changed my aspirations. My dad had been trying to prepare me to learn to drive long before the thought of driving was in my head, he encouraged me to play computer games (not many parents do that! :-)) to make sure my reactions were good.

wheelchair and car

It is obvious, that someone who only has no reliable control over their left side cannot drive a ‘normal’ car. It had to be ‘hacked’. This kind of hacking has to be done by working with professionals. So I went to a driving assessment centre and they checked what parts of my body responded normally and what parts didn’t and then advised on how a car could be adapted in such a way that my disability would have no affect on my driving.

So I learnt to drive with an automatic car so that the clutch and gear pedal would not be an issue for my left leg and then they showed me how I could steer my car with one hand, using a steering ball which had buttons on for the indicators, horn, lights etc.

Learning to drive brought me many tears and doubts. Every time I made a mistake, it was too easy for me to blame it on my disability rather than accepting it as a normal ‘learners’ mistake. Some people even told me I was crazy for trying. Fortunately my friends and family cheered me on and  went

out with me. It also helped having a friend with CP learning at the same time. All was well and (against the norm) I passed my test first time and that is getting on for twenty years ago now.

I was doing a bit of research to see how I could advise young people with disabilities today how to go about investigating how to learn to drive.

I discovered that the “Get Going Live” event that takes place on Saturday 13 July at the Donington Park may be a great place to start.. I asked them if they would be happy to write a small piece for ‘Disability Hacker’, they kindly agreed. Get Going Live! put young and newly disabled in the driving seat

Whether moving away from home to college, university or for work being able to drive is often vital to a young disabled person’s independence. Newly disabled people often lack confidence to get back behind the wheel. Get Going Live! is designed to help both.

It’s an exciting one-day driving event, jointly organised by Disabled Motoring (UK) and Mobility Choice, the charity behind the annual Mobility Roadshow, it has a very clear mission: to help young and newly disabled people become independently mobile and plan for their first adapted car.

Young people with disabilities can gain a driving licence at 16, a year ahead of those who are not disabled. For many young people learning to drive is mixed with anticipation, excitement and apprehension. Then there is the responsibility of choosing the right vehicle; not only affordability, but the right model for handling and safety.

If you have a disability it is not always easy to find answers to all your questions. Will I be able to drive? What kind of assistance will I need? What help is out there? Will my car need to be adapted? Where do I start? And for newly disabled people returning to driving following rehabilitation these questions can feel overwhelming.

At Get Going Live! you will gain expert advice in a friendly no-pressure environment from organisations with a wealth of knowledge – from choosing an instructor with experience teaching disabled motorists, to finding out about the adaptation options and vehicles that are right for you.

young man on crutches by carAt the Autoadapt Driver Test Station you will see how quickly you are able to apply force and react to changing road conditions and potential hazards. This helps to determine which adaptations you will need to drive safely and comfortably. It is also a great opportunity to try out the ‘theory’ of driving before putting some of it into practice in your test drive.

Now in its third year Get Going Live! events have been highly praised by both parents and young drivers alike.

Registration is now open at www.getgoinglive.co.uk or call 01344 750 400/01508 489 449.

 


Cartoonist, Hannah Ensor – Cool People 3

card with cartoon explaining "my speech has gone weird!"Hannah Ensor is renowned for using humour to ‘hack’ her own disability and to help others do so too. She uses her talent as a cartoonist to create stickmen products (stickers, keyring cards, books and more) which raise awareness what the everyday reality is of a having a disability (or in her words “differently normal life”) Hannah uses her own personal experience as the foundation of her products which I think  make brilliant icebreakers and turn the concept of ‘pity’ upside down on its head.

bag with cards

I recently bought a few of her keyring cards. (featured on the BBC website). I ordered a couple relating to speech and how it disappears sometimes and that is normal for me!

Another relates to falling over. People do, understandably, freak out when they see me fall over and their response is to try and help me up as quickly as possible, whereas what I really most need is time and space. Anyway Hannah has such a way with words she can phrase this in a small space with a funny cartoon that will get that message across quickly should I find myself in that awkward situation.

Check out Hannah’s stickman communications website and find out about more of the products she sells and the events she has planned.


Squeezy bottles

Squeezy branstonSqueezy bottles – such a great invention, much less fuss, mess and so much easier than taking off the lid and having to wait for it to come out and as for regulating it!

The first product I came across in a squeezy bottle was tomato ketchup but today there is a real variety here are some others I’ve found:

Mayonnaise, Squeezy Barbecue Sauce, Salad Cream, Sharwood Green Label Squeezy Mango Chutney, Marmite, Lion Mint Sauce, Old El Paso sauces, Colmans English Mustard, Branston Smooth Pickle, Organic Baby Food, honey, Brown Sauce, Chilli Mayonnaise, Bovril, oXo.

Enjoy!


Comedian Francesca Martinez – Cool People 2

I was watching the Jonathan Ross show the other night and ‘the wobbly’ stand up comedian Francesca Martinez was a guest. Being in the spotlight is not me at all (and that’s okay), but I’m glad there are people around with huge personalities like Francesca who are comfortable in the media. She is very funny.

I like the way she challenges the word ‘normal’.

**Warning, contains use of the ‘F’ word


Touch lamps

touch lamp
When I’m half asleep the last thing I want to do is concentrate to find the switch to my bedside light to turn it on or off. My solution to this is to a touch lamp – it needs no effort at all to lightly touch the base to turn it off, especially good when I’m at that stage where I’ve read to the point where I’m just about to drop off. You can buy them from a most stores that sell stuff for the home.


Forgiveness and Understanding

bricks flying out of a wallProbably the biggest hurdles  to achievement in my life is not the cerebral palsy but sadly many people’s attitudes. Some people can be unbelievably negative or assume just because my body isn’t steady that my mind doesn’t work properly either or even worse that I’m unable to relate to people.

I think if I got cross and defensive every time somebody patronised me I’d be a very angry person. I guess over the years I’ve learnt that the way people treat me speaks volumes about their own insecurities rather than me and try to let things wash over me. Understanding they are strangers who don’t know me. The cashier who exclaims “well done” in a loud voice to me after I’ve put in my PIN number would probably be very embarrassed to learn I had a Masters degree (not that that stops from from being dizzy, I sometimes mislay stuff. but that has nothing to do with my CP and everything to do with my personality and having way too busy mind! :-) )

Having an inner confidence in who I am is important and that can be really hard to maintain when you face rejection after rejection but it’s vital for sanity really, I’m so painfully normal on the inside. I think that’s where my Christian faith really helps, looking at the Bible and seeing what God says about me combined with the comfort of knowing that God understands how I feel helps.

Thinking about it, when Jesus walked the earth he was the most patronised, misunderstood man that has ever walked the planet. There he was – God!! – creator of the universe … and people were guessing he was a good prophet like Elijah or Jeremiah, but his best friends, the disciples knew exactly who he was. When the Roman soldiers crucified him he said “Father forgive, for they don’t know what they are doing.” I do my best to follow Jesus’ example and not become grumpy and bitter when people underestimate me. (Although I think it’s okay to feel sad and disappointed when people don’t see your potential and to be able to share that with friends who will reinforce it’s them and their ignorance and not you.)

If you have a friend/employee who has a disability – be willing to stand up and be an advocate for them if they need it, especially if they have a speech impediment as until people get to know you, few people will invest time to listen.

On the positive side I can say that there is a richness in the friendships I do have a deeper connection is made. I find the obvious disability I cannot hide helps friends know it is safe for them to open up about their own hidden disabilities and hurts … everybody is broken somewhere.


Tilting Mirror

tilting mirrorLast year I had my bathroom re-tiled and needed to buy a mirror that wouldn’t mean drilling into the tiles (I am quite petite so a mirror needs to be quite low) I ended up getting this tilting mirror from next and I just wondered if this might be also be a useful solution for someone using a wheelchair as it tilts down if you are positioned low and up if you are positioned higher.

 

 

 

 

 

 

 


Just cracked an egg with one hand

fried egg on toastYou know how people say – “I’m fed up looking on Twitter/Facebook to read what people had for breakfast!”. Well … please understand why I think it’s news worthy to tell the world I just had fried egg on toast for lunch today. :-)

So, okay, I guess for most people cracking an egg is no big deal and something they can do in their sleep. For me though, it’s not. It requires the fine motor skills of two hands, or if done with one hand (like many professional chefs do) you need a very steady ‘good’ hand which I haven’t got.

As I mentioned in my post about shelling hard boiled eggs – I, along with friends and family have been hunting high and low for a gadget that will break a raw egg for me.

Last week I decided to put the problem to DH’s smart and lovely Twitter followers (see @hackdisability) and people kindly came back with leads which eventually led to the discovery of the ‘Egg Cracker and Separator!’


I ordered it and when it arrived, I must admit at first glance I was rather skeptical. I showed it to a friend and I said: “It looks like something out of a Wallace and Gromit movie don’t you think?”. She laughed and agreed. Anyway I gave it a go today and to my surprise it works! It is so simple, you just place the egg securely in the cradle and squeeze over your frying pan or bowl. Out comes the yolk (whole) with the white.

It does come with an “egg separator” which you can fix on the end – this works but is going to take some practice for me. Unfortunately the egg separator is really too shallow so the yolk can escape from the top if there’s a bit of a wobble – otherwise it seems to be a fantastic gadget! So if you know anyone who might struggle cracking eggs please tell them about this gadget. It really does work. I found a review of the American version on Youtube which looks exactly the same as the one I have.

Now to make some cakes!