What’s in my bag: UCMD edition

The ‘what’s in my bag’ post is a popular one amongst many bloggers. I guess it’s our innate curiosity that makes us so eager to know the personal contents of a complete strangers bag. Nosey beggars we are!

Nevertheless, most people carry around the same few items on a day-to-day basis, right?

– Wallet, phone, keys…

But what does a wheelchair user routinely carry with them?

Here’s an insight into what I, a young woman with muscular dystrophy, take with me in my bag.

  1. Ventolin Salbutamol inhaler with Haleraid – I keep one at home but also ensure I have one of these in my bag at all times. I find these inhalers difficult to use without the Haleraid device, which I highly recommend for those with small or weak hands.
  2. In addition to the usual house and car keys, I have a Radar key which provides access to over 9000 accessible toilets throughout the UK.
  3. Empty bottle – if you read my blog, you may be aware that I have a suprapubic catheter. So, when out and about, I have found it a good idea to keep an empty bottle with me. I’m sure I need not explain why…
  4. If using public toilets, it’s good practice to carry a small bottle of hand sanitiser. I get mine from Primark as they’re super cheap and portable. I’m also susceptible to coughs and colds so this helps me to avoid community acquired viruses.
  5. Wet wipes – I prefer a smaller bag as I’m rather petite. So I usually leave a packet of wet wipes in the car. These things are invaluable and versatile, particularly for us girls!                                                                After indulging in fast food, using public transport and toilets, refuelling the car, for cleaning a dusty wheelchair, or simply freshening up on hot summer days. Wet wipes are a must.
  6. Tissues – you can guarantee the one day I don’t put a tissue in my bag is when I’ll desperately need one.
  7. It’s now June and around this time of year I suffer with hay fever. As you may know if you read this previous post, I’m also allergic to horses. I therefore keep some antihistamines to hand, should I run into a horse. As you do.                                                                                                           You can buy Loratadine tablets for less than a pound in some shops. There’s no point spending more for branded versions, they all do the same job. However, if for any reason you struggle with tablets, I recommend Boots Hayfever Relief Instant-melts. They are quite pricey but as the name suggests, they melt easily on the tongue and leave no nasty aftertaste. And they work!
  8. Chewable multivitamins – I try to stay as healthy as possible by taking a daily multivitamin supplement. I have a big pot of tablets at home but on the go, I prefer to pop a sachet of chewy multivitamins in my bag. They’re much more lightweight than pills and you don’t need a drink to take them.
  9. Drink – usually Lucozade (although they have recently cut the sugar content by half resulting in a distinct change in flavour. Damn them!) I’m not in general a fan of energy drinks, nor do I have a sweet tooth. But this stuff got me through Uni. As I get older, I become weaker and more fatigued due to my muscular dystrophy.                                                     It’s not the healthiest thing in the world I know, but I’m pretty clean living otherwise. Lucozade helps fight exhaustion. Lucozade is my friend!
  10. Straws – I can still lift cups, glasses and bottles to drink from, but a straw just makes life so much easier, especially if you’re en-route and jigging about in the back of a wheelchair accessible vehicle! I often swipe them in bulk from the cinema or good old Maccie D’s.
  11. Ensure compact milkshake – if I’m out all day or travelling for several hours, I’ll take one of these with me for convenience. They’re easy to pop in your bag and one small bottle provides 300 calories. Some people complain about the taste. I’m not going to lie and tell you they’re delicious, but they’re certainly not offensive. And for those of you who struggle to keep your weight up and achieve a nutritionally complete diet, these do the job.
  12. Chewing gum – apart from the obvious purpose of maintaining minty fresh breath, gum really helps to relieve bloating. Like many with scoliosis, I struggle to eat a lot as there’s little room for expanse. But, sometimes my eyes are larger than my belly and I force myself to eat more than my body will allow. I then feel uncomfortable and even tight-chested. Chewing encourages a faster rate of digestion, thereby easing this discomfort.                                                                                            Furthermore, I’m not a particularly anxious person but I have noticed that chewing gum helps somewhat. Is this just me?
  13. Phone – everyone carries a mobile phone with them nowadays, but for me it’s essential. If I’m out in my car and it breaks down or there’s an accident, I can call someone. Similarly, if there’s a fault, malfunction or damage to my wheelchair, I would be stranded without my phone.
  14. Cards and cash – well, obviously. I wouldn’t get far without any money. I always have some cash with me for parking as well as ID since I look about twelve. I was born in the 80s, I swear.
  15. Blue badge – This lives in the car and it really is a huge help for us disabled folk. I’m out, here and there in my car most days and ever in search of accessible parking spaces. I couldn’t be without it.                                    

20 Questions Tag!

We Brits have endured turbulent times of late. So, in an attempt to inject a little light relief into proceedings, I’ve devised my own 20 questions tag.

I’ll kick things off and tag a few fellow bloggers who will then (hopefully) answer the same 20 questions. Not the height of excitement folks, I know. But it’s a brief respite from the continual political talk going on right now.

Ok, here goes…

1. Morning or evening person?
Evening. Always have been, even as a kid. I just don’t function in the morning.

2. Night in or night out?
These days (because I’m so old) I prefer a cosy night in with a good film and good food. The weather here in England is generally crap so I really have to force myself to leave the house when invited out on a cold, rainy evening.

3. Lots of friends or a few close friends?
A few friends. My closest circle of friends are those I have known for almost 20 years. It’s best to keep them sweet, they know too much!

4. Time to yourself or time spent with others?
As sad as it may seem, I actually love my own company, especially as I still live with my parents. It’s not as though I have a home of my own. So, I appreciate time to myself all the more. I’ve always been able to occupy myself. My folks often say I would happily play alone as a tot. Take that as you will…

5. Holiday at home or abroad?
Abroad, definitely. I rarely have the opportunity to travel so when I can, I prefer to go abroad, mainly to escape the British weather.

6. Countryside, seaside or city?
Seaside. I live in central England so I’m several hours drive from the nearest coast. It’s a rarely seen sight for me. I always wanted a house overlooking the sea. I just love everything about it.

7. Hot climate or cold climate?
Hot! I have muscular dystrophy and poor circulation. Thus I really feel the cold. I always feel so much better in every sense when in a warmer climate.

8. Books or films?
I’m a big film buff. Admittedly I watch a lot of films. Box sets seem to be the ‘in thing’ at the moment. I’ve been told I should get stuck into Game of Thrones and Stranger Things, among others. I may do at some point. I did watch Fargo season 2. That was decent. But I just don’t have the patience for TV shows. I like to settle down at night and watch a good film. 2-hours and you’re done.

9. Rice or pasta?
Rice. I like pasta but it’s much stodgier. Due to my MD, scoliosis and respiratory decline, I have limited space for food as it is. Plus I find rice more versatile.

10. Tea or coffee or..?
I like the smell of coffee but hate the taste. I’ll drink tea but I’m not a huge fan. I live on Lucozade. Bad I know. But it literally got me through Uni. Can’t believe they’ve changed the recipe! Bloody sugar tax. It really doesn’t taste the same anymore.

11. Cook, takeaway or eat out?
Ooh, I enjoy all three. Depends how I’m feeling I guess. I rarely have a takeaway so when I do it’s a treat. It’s nice to eat out with family or friends. And I do like to cook because it means I’m involved and can eat whatever I want. I’m a bit of a bish, bash, bosh type. I don’t like to be restricted by a recipe.

12. Formal or casual?
Casual, all the way. I don’t do formal!

13. Dogs or cats?
I love both and have always had cats and dogs. I’ve never known life without a pet. If I had to choose I would probably say I prefer dogs. Generally more loyal I think.

14. Play it safe or be daring?
I wish I could say I’m a spontaneous type, but unfortunately MD doesn’t lend itself to such a lifestyle. I hate routine and monotony. I’m as daring as I can be.

15. Idealist or realist?
Realist. I have to be. My whole existence requires consideration, planning and organisation. It’s nice to dream every now and then but dreaming tends to lead to disappointment.

16. Lead or follow?
I guess I’m a bit of both, depending on the context. I prefer to follow as I don’t like responsibility or being held accountable. I’d rather go with the flow. But I am an employer -reluctantly – since I hire my own PA’s. Therefore, this calls for a degree of leadership.

17. Work or play?
Play. Life’s far too short!

18. Lennon or McCartney?
Lennon. Sorry Paul.

19. Love or money?
Love, no doubt. Cliché maybe. Money helps, of course. I wouldn’t turn it down. But at the end of the day, when the shit hits the fan, all you want is your loved ones around you. All the money in the world won’t cure my MD. But love makes life worth living.

20. Share your problems or keep them to yourself?
I’m often accused of being secretive, guarded and evasive. I do bottle things up. I know “it’s good to talk”, and all that. But I just don’t find talking about my problems helps. I don’t like people to know when I’m unhappy or ill or struggling.
I’ll be honest, I find it difficult sharing so much about myself on my blog. I hold a lot back. I’m not a fan of social media and it took me months and months to finally submit. Months and months of friends pushing me to give it a go. I still require the odd kick up the ass to persist.


I hope you enjoyed this post. Let me know what you think.

I tag:

Uncanny Vivek
SimplyEmma

 

 

Suprapubic Catheters (SPC)

Have you ever looked at a disabled person and wondered how they go to the loo?

I am physically disabled (Ullrich congenital muscular dystrophy) and have, in fact, asked this question myself many times over the years. As a wheelchair-user unable to weight-bear, toileting was always my biggest obstacle. Believe me, I’ve tried every method, technique and contraption available. But if you can’t stand or transfer, HOW do you do it?

Most wheelchair-users require the assistance of at least one other person to hoist, transfer or manually lift them. From experience, I can tell you this is time consuming and challenging enough when in your own, fully adapted, accessible home. When out and about, going to the loo can be an absolute nightmare!

Public facilities for disabled people are vastly inadequate. Bathrooms are barely big enough to accommodate a manual wheelchair, let alone a powered wheelchair plus carers and the necessary room to maneuver. They are often used as storage cupboards, occupied by cumbersome baby-changing equipment and the litter covered floors are filthy. This lack of consideration and basic adaptions in disabled toilets means that many are forced to lay on these dirty floors in order to be dressed and undressed. It is degrading and wholly undignified.


In October 2011, after careful consideration, I elected to undergo medically unnecessary surgery (on the NHS) to insert a suprapubic catheter (SPC).

I have always had full sensation and an otherwise healthy, fully-functioning bladder. Despite a lifetime spent severely restricting fluid intake and holding the need to urinate, I thankfully never suffered from urinary tract infections. I was not physically incontinent, rather socially or environmentally incontinent, since public toilets fail to meet my practical needs.


Following many requests for information and advice, I have written about my personal experience with a suprapubic catheter. Please refer to the document below, which you are welcome to download and print as required.

*Disclaimer* This is my experience only, and in no way represents that of any other person(s). 

Suprapubic Catheters – My Experience

Please feel free to ask questions and leave comments! 

Excuses, excuses: why there’s no good reason to not vote

“I haven’t got time”

“I forgot”

“I didn’t register”

“I was on holiday”

“I didn’t feel well”

“Something came up, so I couldn’t get to the polling station”

“I couldn’t be bothered”

“I’ve got better things to do”

“My vote won’t make any difference”

“who cares?”

“I’m not interested in politics”

“I don’t like any of the leaders so what’s the point?”

“It’s raining! I’m not going out in the rain just to vote!”

“They’re all corrupt anyway”

“The polling station is inaccessible!”

So many excuses I’ve heard over the years. As someone who has never missed an opportunity to vote, I am always frustrated when others fail to. Regardless of your circumstances, there really is NO EXCUSE!

I live semi-rurally and my local polling station – an old building with many steps – is not wheelchair accessible. Now I’m all for inclusivity and accessibility. But, this has never been a cause for concern as it doesn’t prevent me from casting my vote. Years ago I registered online (an easy process) for postal voting. I don’t even need to leave the house to have my say!

Like it or not, politics does affect each and every one of us. Each and every ballot paper counts. Ensure you make your voice heard by marking your choice with an X this Thursday, June 8th!

Failing to vote is failing to care.

Take advantage of your democratic right.

A United Kingdom

Rather than the usual Friday ‘I miss… I’m thankful’ post, I decided this week to reflect on current issues including the General Election and terrorism in the UK. Don’t worry, I’ll try not to get too deep & dreary!

Trying times

It’s fair to say that the past few weeks have been rather tumultuous here in the UK. Election fever has reached its peak as we edge ever closer to the public vote, to be held on June 8th. It’s very much a two-horse race with Labour’s Jeremy Corbyn facing off against Conservative Prime Minister Theresa May.

Now I don’t want to delve into party politics or voice my own predilection. While I do think it’s important that everyone who can vote does so, I don’t feel it necessary to impart my views or those of any other. At the end of the day, we are all individuals with diverse circumstances and priorities. Therefore, I haven’t and won’t be publically advocating any particular party. It is for you to decide who to vote for. All I will say is, please ensure you do make time to cast your vote. After all, people died to allow us the right to have our say. And frankly, if you don’t vote, you really can’t complain.

Manchester

Late last Monday, 22nd May, a terrorist attack occurred at the Manchester Arena. A 22-year-old suicide bomber took the lives of 22 individuals, including children. 116 others were injured, some critically.

This follows the recent incident in London’s Westminster, when on 22nd March, 4 were killed and 50 more injured by a lone assailant.

Such events are sadly becoming more commonplace in the UK, and we are increasingly told to remain vigilant.

It’s a distressing prospect which affects us all, whether directly involved or not. I was in utter disbelief on hearing of the Manchester bombing, particularly because it took place at a Pop concert and targeted children. What goes through the mind of the person who carried out such a horrific and devastating act is just inconceivable.

The future generation

I am soon to be an aunt, and so the impact on me was greater for this reason. I wonder, in what kind of environment will my new niece or nephew grow up? Will they learn to accept terrorism as the norm? Will they one day be targeted?

We see it on the News every day: ISIS-led atrocities in Iraq and Syria, militant barbarism, explosions, executions and so on. We associate this with the Middle East, not with the Western world and definitely not with us. Not you and me.

But the sad truth is, we are involved, we are a target, and we are fighting a war with terrorism. But what I am thankful for and proud of, is the way in which we respond to attacks made against us.

Stand together, united

Any attack against our nation is an attack against us as individuals and against our freedom. It is personal. We all feel it. As a result, we all pull together in trying times.

Reports of the tireless work of emergency service staff, the charity of taxi drivers, help from the homeless and those from afar offering aid on their day off work. These heart-warming stories unite us. People from all walks of life join forces to repair and rebuild. This is something that the terrorists can never take from us. We are strong and defiant and we refuse to live in fear.

I’m thankful

So, in-keeping with my usual Friday themed posts, I’d like to conclude by saying that I am thankful to be living in the UK. I am thankful to be living in a diverse yet united nation. I am thankful that here in England I do not live every day in fear or peril, unlike many unfortunate people in the world. I am thankful for the strength, courage, pride and positivity of Britons. Furthermore, I am thankful for the emergency services and for the NHS. Truly, where would we be without them?!

I miss… I’m thankful #16

I miss… my childhood bedroom, which was on the first floor of our family home. My room, next to my parents’, had the best view of the house, looking over a distant rural scene.

Since I couldn’t climb stairs, I accessed my old bedroom via a fairly cumbersome stairlift. Though it occupied the majority of the staircase and was considered (by some) an eyesore, I miss it somewhat. I would at times amuse myself by transporting the dog or cat up and down on the seat or footplate. Don’t panic, they enjoyed it – honestly!

Having lost the ability to weight-bear at the age of 10, it became increasingly difficult for me to access the upper floor of our home. So, in 2000, my parents made the decision to extend the ground floor and build a level-access bedroom and ensuite bathroom for me.

At the age of twelve, I left the security of my old bedroom for my new, street level room. It took a long time for me to grow accustomed to sleeping so far from the rest of my family. My parents and older brother slept in close proximity, safe upstairs, while I slept (or tried to) all alone on the lower floor.

My new bedroom is extended from the living-room, and consequently people seem to feel it is part of the shared family space. They often stroll in and out at their leisure, visitors included. This continues to be infuriating at times, though in all fairness it’s a small price to pay considering all that my parents have surrendered to accommodate me in their home.

I’m thankful… for the selflessness and sacrifices made by my parents for my benefit. I have previously mentioned the different ways in which my parents support and provide for me. In this case, the sacrifice was primarily financial.

As I was below the age of 18, it was my parents income that was assessed, meaning that they were afforded only a partial grant towards the build. To supplement the cost, they extended their mortgage. They didn’t have to do this. They did it for me. They did it to allow me greater independence and flexibility as my needs changed with the progression of my condition.

I’m now 28 and I still live with my parents in their home. Not ideal, no. We get on each others nerves from time to time. Disagreements are unavoidable. From this, it’s easy to want for more, and to wish I could move out and have my own space. The grass is always greener, perhaps. But it’s important to remind myself of all that I have and not what I don’t have. It’s important to remember all that my parents have done for me throughout my life. After all, not many would put themselves through years of debt in order to extend their home for the sake of their disabled daughter.

Walking vs Wheelchair: Accepting the Need for a Wheelchair

I was recently invited to write a guest post for the lovely SimplyEmma.

You can view my post for Emma here.


I’ve noticed a lot of discussion, within Facebook groups, around the topic of walking versus the use of a wheelchair.

Many disabled people gradually lose the ability to walk over a period of time. Often it occurs in stages: from independent mobility, to the need for walking sticks, then a frame and finally a wheelchair.

I appreciate that for the individuals affected, it is an incredibly difficult decision to make. Do I continue to walk for as long as possible, despite the struggle and restraints? Or, do I resign myself to the confines of a wheelchair?

I have noticed, from comments on social media, that this is how some view wheelchairs: objects of confinement and restriction.

On the contrary, I see my wheelchair as an essential mobility aid, removing the limitations I faced when walking for only short durations. The powered chair I now use offers me freedom and independence.

Obviously, your condition and individual circumstances determine whether or not you have the option to continue walking.

Personally, I never had a choice. I have Ullrich congenital muscular dystrophy and lost the ability to walk quite abruptly at the age of 10. Not that I could walk very well or very far up to that point.

Nevertheless, the choice was taken from me. I had reached a stage where I literally couldn’t support my own weight. Grit and determination played no part. And so, I went from walking minimal distances whilst wearing leg splints, to using a manual wheelchair that I couldn’t self propel due to a lack of strength and joint contractures. Sticks and frames were of no use to me whatsoever.

It was a difficult transition, of course. But not totally unexpected. As a child, I was offered little assurance of how my condition would progress. Doctors simply didn’t know. They couldn’t tell me if I would maintain my ability to walk or not. It was a case of, wait and see; roll with the punches. So that’s what I did.

To be honest, I was to a large extent relieved to be using a wheelchair, despite the fact I was dependant on others to manoeuvre me around. Even just a few small steps was a huge feat and physically laborious. That in itself was disabling me.

Committing to a wheelchair full time meant that I was free to roam with my peers. Kids at school used to squabble over whose turn it was to push me around. I was no longer exhausted, battling to stay on my feet or falling over and injuring myself. Being non-ambulant, I no longer had to wear those unsightly leg splints, which pleased me no end!

I had recently started middle school and, within a matter of a few weeks, I found myself completely unable to weight-bear.

However, less than twelve-months later, I was fortunate enough to benefit from my first powered wheelchair. I can’t emphasise enough how much of a difference this made to my life.

I could zip around at break times with friends, I could take myself wherever I wanted to go without the need for assistance, and I could venture into the local countryside. I was no longer confined!

It’s been eighteen years since I took my last footstep. And, I can honestly say I don’t miss walking. Naturally, I wish I could stand, walk and run ‘normally’. But I would never trade my wheelchair for my old leg splints, the bumps and bruises from falling so often, and the constant exertion to achieve a few small steps.

Not that I have a choice.

I miss… I’m thankful #15

A little lighter than last Friday’s post (and one for the girls!)…

I miss… being able to quickly, easily and efficiently shave my own legs.

I have Ullrich congenital muscular dystrophy. With that comes muscle degeneration, contractures and scoliosis. Over the years these have all progressed, thereby making everyday tasks increasingly difficult since mobility is restricted.

With regards to shaving, the main obstacle for me is the shortening of the tendons in my arms, resulting in severe contractures. I can now no longer extend my elbows beyond an approximate 80° angle.

So, after (briefly) considering an ‘au naturel’ look, I investigated alternative methods of hair removal.

Of course I could simply seek assistance with shaving. But I try my best to maintain as much independence as possible for as long as possible.
Therefore…

I’m thankful… I discovered the Razor Reach – an extendable addition to any non-electrical shaver. It’s simple to use, even for me, and can reach up to 18 inches.

Aimed primarily at pregnant women, the Razor Reach is not currently available in the UK though it can be purchased online.

If like me, you struggle to keep your legs silky smooth and fuzz free, I definitely recommend investing in a shaver extension device such as the Razor Reach.

I miss… I’m thankful #14

I currently have one part time PA who will soon be leaving to pursue a new career as a paramedic. So, for the past couple of weeks I have been occupied with the necessary task of finding replacement carers. Advertising, interviewing and responding to individuals has taken up most of my time. Therefore blogging was temporarily suspended and the usual Friday post, absent.

I’ve previously touched on the struggles associated with hiring care staff in my open letter to PA’s. As anyone in my position will know, this can be challenging, time consuming, frustrating and stressful. I never wanted the responsibility of being an employer, but unless I use agency care workers, I’m left with no choice.

So, on that note, it seems fitting that this Friday’s post touch on the subject of care:

I miss… the days long past when it was not a necessity for me to employ carers.

Until around ten years ago, my parents were my primary caregivers. Living with them in their home, as I still do, I was reliant on their support. Alas, parents get older and rightfully so, need more time for themselves.

So at the age of 18, I was awarded Direct Payments and officially became an employer to my first PA (an intimidating prospect). At first, she would attend just three mornings a week. Over time, as I got used to this change of routine, and my trust in someone outside our family unit grew, the hours increased to five mornings.

I have since employed several others, and experienced the hiring (thankfully not firing) process a few times over the past decade.

Entrusting my requirements to PA’s is now very much part of my life, yet it’s something I wish I didn’t have to do. I don’t necessarily choose to spend my time with those I employ, it’s simply a case of needs must.

Employing carers is synonymous with scheduling, routine, organisation and discipline. I, as an individual am not synonymous with scheduling, routine, organisation and discipline!

When becoming an employer, as I reluctantly have, you must adapt your lifestyle somewhat (or so I have found). You are responsible for your employees and are obliged to make yourself aware of the legislation involved, since you play a role just as your carers do.

My point here, is that I miss my pre-employer life. I wish I didn’t have to submit timesheets every month, calculate tax and national insurance contributions, ensure I have holiday and sick cover, treat my employees fairly by addressing their needs and concerns – and so on.

I wish I did not have to invite strangers into my home to help with my everyday challenges. I miss being able to stay up at night for as long as I like. I miss not having to plan my days and weeks; What time do I want to get up in the mornings? what time do I want to go to bed?

I’m thankful… that I applied for Direct Payments all those years ago and didn’t delay, since it is much more difficult nowadays.

Direct Payments (UK) is awarded by the local council following an assessment of your needs.

For me the process was fairly straight forward and swift. However, I am aware that for various reasons it is now more strict, time consuming, and arguably more stressful. I have no doubt that had I waited several years to apply, I would not be in the fortunate position I am now with regards to the hours of care I am afforded.

Direct Payments allows me to hire a PA of my choice, whilst also offering my parents a break from their care role.

So, all things considered, though I would rather not have to employ carers, I certainly could not manage without them.

A positive perspective on disability

Here is my latest piece for Limitless Travel.


We as a society often consider disability to be disadvantageous. Many disabled people themselves hold this viewpoint. Of course there are various challenges and downsides to living with a disability. But having lived with muscular dystrophy all my life, I have come to realise that there are also many positives.

It’s all too easy to succumb to self pity; adopting a pessimistic attitude towards your impairment and complaining about all the things it prevents you from doing.

I won’t deny I fall victim to this school of thought from time to time. I’m only human after all. But at the end of the day, I’m stuck with me. There’s no cure for muscular dystrophy and so there’s really no point in wasting valuable energy complaining about something I cannot control.

To counteract the common perception that to be disabled is to be disadvantaged, I have decided to list some of the ways my life has been enhanced by my condition.

This is not a universal guide and is applicable to my personal experiences as wheelchair user. So, in no particular order…

  • Being able to skip to the front of the queue has brightened my day on many occasions.
  • Concessions: Many leisure facilities and tourist attractions offer some sort of concession for those with a disability.
  • In most cases a carer can accompany you for free. If you don’t have a carer, take a friend instead.
  • Parking: I hold a blue badge which allows me to park in, of course, disabled bays as well as on single and double yellow lines for up to 3 hours. The blue badge scheme is recognised by all European countries.
  • Thanks to the Motability scheme I have a wheelchair accessible vehicle in which I travel as a passenger. Essentially a free car, all I have to fund is the fuel.
  • I can’t drive. Admittedly I wish I could, but the upside is that I have the freedom to drink when I’m out as I’m never the designated driver. Being chauffeured around means I can relax and enjoy the journey rather than stress over traffic and navigation.
  • Shoes never wear out and so last forever. Furthermore, if I don’t feel like wearing shoes, even to go out, I don’t have to since my feet never touch the ground.
  • I always have a comfy seat. I never have to stand around acquiring aching limbs.
  • Kids are fascinated by my wheelchair with all its buttons and mechanisms. They love to sit on my lap or climb on the back and go for a ride. I’m always happy to oblige!
  • Being unable to weight bear, I never have to worry about falling over (a common problem for me as a child). Frosty weather and black ice is no concern.
  • Being faced by an oncoming electric wheelchair causes people to instinctively move out of the way. Move or be mown down!
  • I can run into idiots and get away with it by blaming my wheelchair. Disclaimer: I accept no responsibility if you decide to follow my lead. But by all means do!
  • Similarly, if someone is getting on my nerves I can ‘accidentally’ run over their foot.
  • It’s pretty frustrating finding yourself stranded on the top floor because the only lift has malfunctioned. But there’s always a silver lining: being carried down stairs by a strapping young man is a small price to pay for such an inconvenience.
  • Determination: I believe my perseverance (some would say stubbornness) is a result of living with my disability. I have in many circumstances had to fight harder, work harder and prove myself more than I would have had I been able-bodied.

  • I’ve been introduced to many people from all walks of life (pun intended) who I would never have otherwise. Consequently I feel I have developed a broader perspective on life and a greater awareness of social diversity.
  • My limitations force me to think outside the box. As a wheelchair user there are many struggles; some small and some great. In order to overcome these challenges, I have had to continually think creatively and imaginatively. This may be through adaptive technology, home modifications or inventive DIY solutions.

Do you agree that there are not only disadvantages, but also advantages of living with a disability?

If so, what are some of the benefits and positive aspects of your disability?