I miss… my childhood days when the six weeks school summer holiday seemed to last forever.
Maybe it’s my nostalgic perspective but back then the seasons seemed so much more defined. Winter was much crisper and colder than today and the summer was long, hot and rarely a cloud was seen. As the years pass, the seasons appear to be shifting and even blending into one.
We Brits joke about the state of our summers. But all joking aside, when like me you live with a disability such as muscular dystrophy, you long for the Sun to make a prolonged appearance. So when the entire summer is a complete wash-out, my health and mood is negatively impacted.
I’m thankful… that the Sun is now a regular feature and the summer is fast approaching. Summer is by far my favourite season for many reasons.
Firstly, the warm, dry weather is hugely beneficial for my condition. Unlike the winter months, coughs and colds aren’t rife and so I need not be constantly on guard. Furthermore, since I am immobile and suffer from poor circulation, I struggle to regulate my body temperature. More often than not I feel cold, really cold. Therefore, as soon as the temperature begins to creep into the 20’s, (optimistic for the UK but I live in hope), I’m able to shed my well-worn woolly cardigans. It’s therapeutic simply to be able to venture out into the fresh air, to relax all day in the garden and expose my skin to the Sun.
Everyone seems so much happier throughout the long, hot days of summer. No miserable faces, no moaning about the crap British winter weather, no need to wrap up in several sweaty layers, no 4pm sunset!
I can only speak for myself but the sight of a clear blue sky and the summer Sun lifts my spirits and reinvigorates my mind and body. Roll on, roll on..!
By the way, I’m now on Twitter! Please follow me: @claimesuk
Being a wheelchair-user with Ullrich congenital muscular dystrophy, means that I have a very visible disability. Consequently, I have encountered many societal preconceptions over the years, based solely on the fact that I have a physical disability.
Joe public isn’t shy about voicing such assumptions, regardless of how stupid they may be, thus demonstrating a lack of awareness and education.
I can’t even reassure you that the following misjudgements are those of children who, through no fault of their own, know no better. In fact I have found that the most narrow-minded and ignorant ideas and interrogatives come from older people.
Here are some examples of the preconceptions I have personally experienced throughout my 29 years.
1. Because I am physically disabled I must therefore have learning disabilities too.
2. I didn’t or couldn’t have attended mainstream school.
3. I need to be spoken to very slowly and very loudly, otherwise I simply won’t be able to understand basic verbal communication. Furthermore, some people surmise I cannot speak at all!
4. Because I have muscular dystrophy, I cannot achieve the same milestones as everyone else, such as learning to drive.
5. I cannot work, or contribute to society, because I am physically disabled.
6. Most assume that since I’m now unable to walk, I never could. They are often shocked to learn I could walk up to the age of ten.
7. I am completely non-ambulant (unable to weight-bear). However, many seem to assume that despite the fact I use a powered wheelchair, I must be able to walk.
This becomes most apparent when attempting to access public transport or when travelling.
I may be faced with a few steps or a short walk to my seat on the plane, or I might be asked to transfer out of my chair.
When I tell them I can’t weight bear at all, I am met with an expression of complete confusion:
‘You can’t walk? Not at all? It’s really not far.’
No, I’m afraid I cannot walk AT ALL!
8. As much as I laughed along to the Little Britain sketch of Lou and Andy, I feel it may be at least somewhat responsible for the common assumption that I, along with all other wheelchair-users, conveniently jump up and run around maniacally when no one’s watching. Although admittedly I would if I could, sadly this is not the case.
9. When you find accessible accommodation isn’t accessible at all:
Upon arrival, I once found myself unable to enter my supposedly accessible hotel room because the door was so narrow. The manager’s response: ‘Oh, can’t you just squeeze through?’
10. I am rather petite – child sized in fact. (Just what you want when you’re a 29 year-old woman!) However, I like to think I look a little older than twelve. But I am still, on occasion, presented with the children’s menu!
11. On multiple occasions I’ve been approached by strangers who tell me that I sinned in a former life and my disability is my penance.
12. Similarly, I have been asked if I believe in God. Replying that I do not, I was told that I am therefore being punished by God – my disability is an affliction! Erm, nope. In my case, it’s genetic.
13. I’ve been told I need “fixing”.
14. It doesn’t occur to people that I have the same needs and desires as anyone else.
15. A misguided generalisation is that disabled people like myself are asexual and do not have romantic relationships.
16. Being a wheelchair-user, I clearly can’t have and don’t want children.
17. Friends are too often mistaken for my carers.
18. I must know many other similarly disabled people. Of course, makes total sense. We are know each other!
19. I use a wheelchair, therefore I must be taking LOTS of medication and cannot drink alcohol.
20. I have a disability therefore I must be contagious.
21. I don’t go out or have fun like my peers.
22. I must be a loner or even a recluse. (Perhaps suggesting there are still many out there who feel disabled people, like me, shouldn’t be seen in public or play an active role in the community).
*This list is representative of my personal experiences. However, I’m sure there are many of you who will be able relate to some degree.*
It is understandable and all too easy to express anger and frustration when presented with such ignorance. But, I do feel strongly that knowledge is power. Therefore, the best way to respond to such misguided preconceptions is to educate, infor and raise awareness.
I miss… blissfully and carelessly playing on my garden swing as a child.
Every kid loves playing in the park and daring to see how high they can reach on the swings. I was no different. The only thing that was different was my garden swing. I had a blue ‘bucket’ style, full support swing much like the one in the picture, (although I never wore the straps – what a rebel!), and I absolutely loved it.
After school, weekends and school holidays I would beg anyone and everyone to push me as high as they could for as long as they would indulge me. I loved the sense of freedom and almost weightlessness, the rush of fresh air, my legs swaying as furiously as they’d allow.
Back then I had only a manual wheelchair which I couldn’t propel myself and so I felt confined, frustrated and idle. I desperately wanted to be able to run around frantically with my friends, to experience that exhilaration and energy.
For as long as I could and when opportune, I loved to ride roller coasters since it was one way for me to feel that same thrill. But, the sad fact is roller coasters are simply not designed for those with any kind of physical disability. Before long it became impractical and too difficult to manually lift me on and off of the rides.
That is why I held on to my beloved blue swing for as long as possible. Thankfully I never grew too much! Although somewhat cocooned in the seat, I never felt restricted, only safe and secure thereby enabling me to swing to crazy heights if so inclined.
For anyone out there who has kids with a disability, I whole heartedly recommend investing in one of these full support swings. They now come in a range of sizes, even accommodating adults. It may seem a simple pleasure but honestly, for someone with limited mobility, the sense of being lifted from the ground and into the air at speed is invaluable.
I’m thankful… that I started blogging and am therefore able to share my knowledge and experiences with you. Unless people tell you of devices such as the full support swing, you’ll never know about them and will never realise the benefit.
Every day there are more and more facilities, devices and items of equipment being developed for those with disabilities. But I know only too well that unless you actively seek them out, you’re unlikely to learn of them as they are not widely promoted. It’s not as if you will see them out in the mainstream or on the shop shelves.
All of my physical aids have been found through word of mouth, searching for something to solve a certain issue or sheer inventiveness. So, if this blog can help at least one person out there, I’ll be happy. After all, until someone told my parents about the full support swing all those years ago, they were none the wiser. I may never have had those hours, days and years of enjoyment.
By the way, I’m now on Twitter! Please follow me: @claimesuk
Whilst at primary school I learnt to ride on horses owned by friends. My mom has always loved horses and was quite an accomplished rider herself as a youngster. So, it seemed obvious that I too should learn, spending time with my friends at their paddock, having fun trotting around the fields.
I was small enough and light enough to be thrown up onto the saddle. I’m not delicate so I didn’t mind. A few bruises here and there was worth the enjoyment.
I was good too. Considering at that time I could only walk around my home or the classroom, and I had noticeable scoliosis. When on horseback I somehow sat up straighter than ever.
This all came to a stop rather abruptly, not because of my disability, but due to the fact that I suddenly developed an allergy to the horses! Yes, laugh it up. It really is so ridiculous it’s funny. Literally overnight I couldn’t go near them without streaming from the eyes and sneezing uncontrollably.
I’m thankful…that I was fortunate to have had that experience at all. Many with muscular dystrophy are unable to take part in such physically demanding activities.
Despite my rather comical allergy, I too am no longer able to ride horses due to the progression of my condition. As much as it would amuse onlookers, if I were to try now I’d simply fall off and land in a heap on the floor!
Imiss…not having to worry about catching every virus circulating throughout society.
Our school days are spent often in damp, stuffy classrooms surrounded by snotty, sniffly kids. Coughs and colds are unavoidable.
When I was at school no one bothered with antibacterial hand gels or antiseptic wipes to contain infection. This was back in the days when disposable tissues weren’t commonplace. I remember my dad sending me off with a handkerchief shoved up the sleeve of my school jumper. How hygienic!
But I never worried. Obviously no one wants to get ill unnecessarily. But back then, if I did catch the latest cold I’d struggle for a week, taking time off school (silver lining!), and after a course of banana medicine (who remembers?) I’d be fine again.
I won’t lie, I did suffer a few bouts of pneumonia throughout my childhood, for which I required hospital admittance. But again, back then there were no complications. I got ill, I sought treatment, and I recovered without much concern.
These days, the struggle is much greater. As my condition deteriorates, the ability to fight even the most trivial of respiratory infections becomes much more difficult. Treatment is much less straightforward and not without complications. Recovery time seems to extend with every illness. Hospital stays are much longer and far more stressful not only for me, but also my family and the doctors who try to fathom how best to care for me.
I now take every precaution possible to avoid contracting viruses. A slight sniffle for the average Joe can quickly develop into something very serious for me. For those of us with muscular dystrophy, a cold is never JUST a cold.
I’m thankful… for my family.
I’ve said this before but I really am incredibly fortunate to have the family I do. There’s only a few of us – I have no aunts, uncles or cousins. But we are a close, loving and supportive unit.
It may seem harsh to say, but friends, especially those from childhood whom I don’t see too often – people grow up and move on – don’t really understand how my muscular dystrophy affects me. They see me on a good day and assume that’s how I am all the time. Unlike my family, they don’t witness me at my worst, nor do they see the progression.
Don’t get me wrong, I appreciate all my friends. It is by no means through ignorance that they can’t comprehend just how fragile my body and health is. I just think that unless you live with it yourself, or with someone like myself, you can’t fully grasp the situation.
Unfortunately muscular dystrophy is not a widely recognised condition. If you approach someone at random, they’re unlikely to have even heard of it. Neuromuscular consultants and specialists have limited knowledge, particularly of lesser known forms such as Ullrich, which is what I have. So sadly, we have a long way to go in raising awareness within society.
It is for this reason, that I feel so secure in the knowledge that my family are always here to support and care for me, no matter what. No one understands the struggle, the fight, the fear like my family. And I do include medical professionals in that statement! In my experience, doctors don’t always know best. When the shit hits the fan, I know I can rely on family to do what is best for me. I do not take this for granted.
Though I would like to be, I’m not a frequent traveller. Living with a physical disability – in my case, Ullrich congenital muscular dystrophy – can make overseas travel difficult and stressful. However, after several years without a holiday (neither at home in the UK or abroad) I decided it was about time I set off in search of sun, sea and sand – a sight unseen here in the Midlands!
Most importantly, the holiday must meet all my accessibility requirements, (I am a non-ambulant, powered wheelchair-user). Another major consideration was my parents, with whom I would be travelling. This presented me with the task of organising a holiday that would satisfy their wants and needs as well as my own.
Of course, it’s far from ideal to travel with your parents at my age (27), but it was my only option at the time. I resisted their considerate invitations to accompany them abroad for years, but I had reached the point of desperation – one way or another, I really needed to get away. There’s only so much British weather a girl can take!
Planning & Booking:
7 years earlier, I visited Tarragona, situated in the Costa Dorada region of Spain. I found it to be a great place to roam around in a powered wheelchair. Back then I booked with Enable Holidays.
For personal reassurance regarding reliable accessibility (and frankly to make life a little easier), we decided to return to Costa Dorada. When comparing prices online, I found it significantly cheaper to book with Disabled Access Holidays (DAH) – a small business based in Glasgow, UK.
Throughout the whole booking process, I interacted with the same agent who sorted everything. Airport assistance and wheelchair accessible taxi transfers were organised. An electric wheelchair was also hired for the week, as I prefer to travel with just my manual chair for fear of damage to my Quantum 600 (I’ve heard horror stories from fellow wheelchair-users).
The only thing I had to arrange was travel insurance for myself. DAH recommended AllClear, even offering a discount code. I enquired with a few providers though they all quoted a similar price. Just one week in Spain would have cost me over £500 and so, admittedly, I chose to take the risk and travel without insurance.
Off we go…
We flew from Birmingham airport on 7th July (2016), arriving in sunny Reus after a thoroughly chaotic checking-in and boarding process. Conveyer belt malfunctions, lack of staff, delays and the absence of assistance at Birmingham established an initial sense of unease.
What really frustrated me was the fact that we boarded via the centre of the plane – my parents and I being made to wait until last. Since our seats were at the front of the plane, I had to struggle some distance in an old aisle chair, bumping elbows with strangers all the way (bear in mind, I’m pretty damn petite). I can’t stand these cronky aisle seats, mainly because they offer no postural support whatsoever and are incredibly uncomfortable. My balance is poor and consequently I always feel I’m about to fall when forced to resort to one.
Upon reaching our front row seats, my poor Dad was left to manually transfer me by himself, as no one offered to help. There was a complete lack of care and consideration from all staff at Birmingham.
A short and uneventful flight ensued. This was one of my major concerns when organising the holiday. A long haul flight was a no-go as there’s just no way I would be able to access the bathroom. With the best will in the world, in my case it really can’t be done.
Disembarking at Reus:
After the disappointment at Birmingham airport I was relieved to receive a much more conscientious service when disembarking at Reus. The assistance for passengers with disabilities was swift and effective. Without question, the staff safely lifted me from my seat straight into my manual wheelchair which was brought to the front of the plane where we exited, this time without an audience. I was so thankful as I hate to have to burden my parents with the physically exhaustive task of manually transferring me.
Our pre-booked taxi transfer was at first nowhere to be found but soon arrived after being prompted by a phone call. The English speaking driver was extremely helpful and repeatedly assured us that she or another driver would collect us from our hotel at the time and date arranged.
And so we found ourselves at the Medplaya Piramide 4 star hotel in Salou, Costa Dorada. The three of us shared one, accessible room situated on the second floor resulting in a daily battle for the lift which everyone felt the need to use, regardless of age or ability.
Aside from the presence of a grimy shower chair with one, dismembered footplate, it’s difficult to see how our room could be considered ‘accessible’. The bathroom comprised a regular bath along with a roll in shower which flooded our entire room and out into the hallway within seconds. The bathroom door veneer was all peeled away suggesting this is a long term issue which the hotel has failed to address. We had to call reception for extra towels to mop up the excess water flooding our room after every brief shower.
Furthermore, the sink was far too high and unreachable for me to use whilst sat in my chair. The toilet was lower than normal and lacked any surrounding support aside from a fairly redundant and misplaced grab rail affixed to the wall. A small lip in the patio door may cause an obstacle for some in accessing the sizeable exterior balcony but with a bit of a run up I didn’t have a problem in my hired power chair.
The hotel itself, both interior and exterior, I found to be suitable for anyone with a disability. With smooth, flat surfaces, ramp access where needed, wide open spaces to manoeuvre, and a large ground-floor disabled loo, I was able to roam around completely independently. There’s also a pool hoist – a clean, fully functioning pool hoist!
With plenty to keep you occupied including a bar, restaurant, pool room, terrace area, as well as day and night-time entertainment, this modern hotel caters for all ages and abilities. The staff too were welcoming, sociable and most accommodating.
There are some steep pavements surrounding the hotel to be aware of, but plenty of slopes and access points more than make up for this. The hotel is ideally situated, just a short stroll to the impressively accessible Levante beach, 250m from Salou town centre and 1.5km from Port Aventura theme park. The area for the most part is flat and even, making it ideal for wheelchair users.
I have to say the major selling point for me was the beach. Though not an experienced traveller, of all the beaches I have ever visited this one is by far the best. It’s vast, it’s flat, and there are numerous platforms which allow wheelchairs and prams to enjoy a smooth ride right down to the waters edge. I was pleased to see many others with various disabilities accessing the sands without the all too familiar struggle.
Furthermore, the individuals who hire out sun loungers could always be counted on to offer a helping hand if and when needed. Without question they would often come running to the assistance of someone. This is not part of their job, nor is it commonplace (sadly), and so I feel it worthy of mention.
On the whole my week in Salou provided much needed respite and relaxation. However, the biggest dilemma was saved for our last day. Our pre-booked taxi never arrived so we were forced to ask reception staff to telephone for a local cab asap. This took over an hour to arrive since there is only one wheelchair accessible taxi in the local area. Fortunately our return flight was delayed otherwise we would certainly have missed our flight. Despite this rather stressful conclusion to an otherwise enjoyable holiday, I would definitely recommend Disabled Access Holidays. However, it’s also important to do your own research and investigation prior to committing to any accommodation and travel arrangements.