My Solution to the Blue Badge Debate

I’ve not blogged in a while. There are mixed reasons for that but it mainly comes down to the fact that for ten years or more I have been on stonking doses of morphine and other meds and having changed GP surgery recently, my GP advised that the dosage I was on was potentially lethal, informed by new medical studies about the use of morphine at that level. I had no choice but to accept that my meds needed to change but it brought out a lot of anxiety for me. Anxiety that I would be in pain; that my life would be impacted – my work, my ability to parent, hell, my ability to just be me, wash my own hair and get on with my every day life. The reduction in the meds has been gradual to stop any withdrawal symptoms and I have got it down to a reasonable dosage although the GP wants to drive it down even further. However, there is no doubt that the pain is now not managed. It is taking its toll on me both physically and emotionally.

So, when the Disabled Blue Badge scheme hit the headlines recently, it prompted me to return to my blog to share my opinion on that matter because it is close to home, particularly at the moment.

I have had a blue badge for a number of years. I suffer from two chronic conditions: an inflammatory arthritis and Ankylosing Spondylitis, both of which give me chronic pain in my spine and in my joints. I was diagnosed around 14 years ago and have been battling with pain and reduced mobility ever since. The thing about my conditions are that they are incredibly variable. One day I can manage certain tasks, like walking from the car to the shop, lifting my baby girl, putting the washing in to the washing machine and so on and on other days I am bed bound or physically can’t walk or move. It is so difficult living with this uncertainty. It is hard to plan things and for years I felt like all I did was let people down. Texts saying ‘I’m so sorry. I’m having a flare up and I won’t be able to make it today’ were a regular occurance. I let friends down not just once, but repeatedly. I would feel fine one day and arrange something and the next I would be floored. These days I am wary to arrange anything at all as I can’t stand the feeling of letting people down at the last minute. It makes me feel like a crappy friend/ daughter / mother and believe me I already beat myself black and blue with mum guilt, I don’t need any further guilt on my plate. I’ve lost friends a long the way and I certainly don’t get invited to the nights out and the parties that I used to, but theres no point crying over an invitation that I probably wouldn’t be able to attend anyway.

On a ‘good day’ I still battle with chronic pain. I may be a little more mobile but I am still, constantly, in pain. I depend on my car and the blue badge even on those good days as without that I would be pretty lost. Every day trips to places like the supermarket, the bank, the doctors, would be nye on impossible if I wasn’t able to park close by in a disabled parking bay. I start the day with a certain capacity and energy and if I use up that capacity having to walk from a parking bay further away then I am going to be pretty snookered for the rest of the day. On certain occasions, I push through the pain and I end up using a week’s worth of capacity in one day and then I’m out of action for a week after, bed ridden or unable to move. Some days I knowingly make that decision because I want to live my life. On those days I rebel. I want a piece of my old life, even if for just a day and even if it comes at a cost.

Sometimes I have to use a wheelchair, sometimes I have to walk with a stick and sometimes I walk independently; it totally depends on how I am doing and how active the diseases are. Over the last few years as a blue badge holder, I have had my fair share of run ins with people who have seen me use a disabled bay. I regularly have people inspecting my badge, quite obviously, through the windscreen, after they have seen me. I personally think that people see me pull in to a disabled parking bay and on the surface I look (ahem) (relatively) young and, possibly on the surface, healthy. I’m judged before I’ve even got out the car sometimes. People shake their head at me like I’m not supposed to be there; like I don’t have the right to be there. The irony of the whole thing is that I would so love NOT to be there. I would give anything to be able to park at the furthest point in the supermarket car park and cart wheel in to the shop if I could. God, given the chance I’d hop around the perimeter of the car park on one foot, naked.  Sometimes I get the feeling that people view a blue badge as a privilege. That idea knocks me sick to the stomach. Nothing about needing a blue badge is a privilege. I’d give anything not to have that so-called-privilege.

Then there’s all the times where I have come face to face with people who have judged me as not needing that ‘privilege’. Maybe I was having a good day and on the surface it didn’t look like I needed it. Usually I’ve only just got out the car so they are yet to see me even walk. I’ve had vile comments said to me. I’ve stolen the badge. I’m lazy and just want to park close to the shop. I’m exploiting a disabled relative’s badge. I’ve heard it all. Fortunately for me, most of the time my husband has been there with me. My husband is an incredible man. He has stood by me and supported me in every which way you can think of. He has to do so much because I am unable to and I am so grateful for that. He is protective of me. Fiercely protective of me. He isn’t able to stand by when people make these comments and on more than one occasion my husband has challenged these people, shouting at them the reality of my situation. Their response? I’ve never had an apology once. They shake their head at us. Or, at best, they bow their head and scurry on.

My personal experience has found that the most judgemental people are Blue Badge users themselves. I’m not one for making mass judgements but based on my very real and personal experience, it has been blue badge users of the older generation that have made those judgements about me. Whether it’s a generational thing or not, I don’t know but I think it’s really sad that those who share similar limitations in their lives (thus requiring a badge in the first place) would be so quick to judge others on whether they are worthy or not of the same badge.

The fact that the government are now considering allocating those with ‘hidden disabilities’ and non-physical disabilities blue badges sits very comfortably with me. On some occasions I am sure my disability is hidden. I still get up on a morning and try and put my face on. I still try to (badly) do my hair. Maybe that’s the reason, maybe I don’t look poorly or disabled enough, I don’t know. I know I have had similar judgements made when I have used a disabled toilet. On the surface I possibly look absolutely fine. But look closer. Follow me for an hour or two and you’ll see my struggles. Even on a good day.

The opposing view is that those with non-physical disabilities don’t require a parking bay as much as those of us with physical limitations. I don’t buy that. There will be people out there with Autism or Dementia who need support to access places we use in our every day life. Who is to say they need that parking bay less than me or someone else with physical limitations? Who made anyone judge and jury? I totally understand that there are limited numbers of disabled parking bays and, perhaps, that is the only point I would agree with. If more disabled badges are being allocated then maybe more spaces need to be added. But that is the only point made by those opposing the suggestion that I agree with.

I think the solution to the whole debate is kindness. If we were all just a little more kind, a little more empathetic, a little more sensitive, then society would be so much better at supporting those who require a little extra help to access places. Every one who is given a blue badge is given one for a reason. It’s because they have it tougher than someone who is emotionally, mentally and physically healthy. It’s because their life has challenges.  It doesn’t matter whether their challenges are greater or lesser than mine. It doesn’t matter whether they look well on the outside. It doesn’t matter if they got the last disabled parking bay in the whole of the town. Give them a fucking break. They have that badge for a reason. Nobody has any business judging, commenting or head shaking.

The government should allocate blue badges to whoever they believe requires one. If a doctor has assessed a person as needing one, then that should be enough for everybody else. It doesn’t matter whether their disability is visible or not; a doctor has said they need that badge, that should be the end of the discussion.

I’ve been reduced to tears by someone who judged me as not being ‘disabled enough’ to warrant a blue badge before. I was having a really bad day and it had taken me every ounce of strength to get dressed and get in the car to nip to the shops for a couple of essentials. My capacity for the day was done with just getting out of bed. Constant pain wears you down on an emotional level and I was already at that point of only just being able to hold it together. I just wanted to get to the shops and get back home without seeing anyone I knew, without being asked if I was ok, without even making eye contact with anyone. I looked terrible. I felt terrible. I was conscious of the way I was walking and I felt fragile. A couple of vile comments from a complete stranger completely broke me that day. It had an impact. It only further compounded the shitty-ness of my day. Nobody needs that, especially those who live with health challenges every single day.

The solution to the debate? Be compassionate. Be kind. Be sensitive to the needs of others. If you’re a fellow blue badge holder, don’t compare your needs to that of someone else – you can’t possibly tell by looking at someone whether they deserve to be parked in a disabled parking bay.

Kindness is the answer. Topped with a sprinkling of sensitivity and a drizzle of compassion.

Family fun and frolics in Florida.

We’ve been promising our Big Lad a family holiday in Florida for years. He has, for years now, spent countless hours on youtube watching home videos following families as they experienced the theme park rides and water parks. It has been his ultimate dream to go there for so long. Not that he would admit it, but I think his love for the US was ignited when he was an avid viewer of Hannah Montana at the age of five or six or something. I distinctly remember getting cross at him for saying ‘Sweet Niblets’ to me in an appalling country-bumpkin accent every time he got in to trouble. I banned him from watching Hannah Montanna for a month but hell hath no fury like a child deprived of Disney Channel so we lasted all of around three episodes. He’s not quite an avid Disney Channel fan these days but he never lost enthusiasm for going to the US to experience Disney and everything that comes with it.

For years, a big trip to America just hasn’t been possible due to being self employed with a number of businesses and not having the staff to leave them with but when our circumstances changed, we took advantage of the situation and got booked up. Little did we know that months later we would discover that we would be visiting Florida as a family of four and not the family of three we had initially booked for. I have to admit that once I found out I was pregnant, I did have my reservations about taking a ten month old baby on an eight hour flight to a place so busy and so hot but we had promised our Big Lad we would go so that is exactly what we did.

I had been dreading the flight with our Little Miss. For weeks leading up to the holiday I had built up a goodie bag of new small toys and books in a bid to keep her entertained. I was also acutely aware of the fact that she had developed quite a strong talent for high pitched squealing and I was dreading the impact that may have on the other travellers sitting around us. So much so, infact, that I ordered sixty little gift boxes and filled them with industrial grade earplugs, a few sweet treats and an ‘I apologise in advance for any crying I do’ letter from the baby. We popped these on the seats that were closest to us on the plane. It turned out that I needn’t have bothered because just over 30 minutes in to the flight, Little Miss became poorly with sickness and a high temperature. Her projectile vomiting skills within such a confined space were truly majestic. Sitting in vomit soaked clothes for the duration of the remainder of the flight (only a mere six hours or so) was a particular highlight. On the up side though (Did I really just say there was an ‘up side’ to being showered with warm sick?!) she was so poorly that she napped a lot and just cuddled in to me quietly. She didn’t cry once so the earplugs weren’t needed. I bet they wish I’d gifted them a peg for their nose though. The smell of that vomit lingered in the air for bloody hours.

My husband had holidayed in Florida multiple times as a child so he had planned our trip really well, I had nothing to do with it. We stayed for part of the holiday in a hotel on International Drive and the second part at the Disney Dolphin Hotel on resort. We decided not to accept the car that we had been offered as part of the holiday package (my husband and I argue enough about driving at home without throwing the driving-on-the-other-side-of-the-road dynamic in to the mix too) and instead we have used Uber throughout the holiday to get us everywhere. We took the baby’s car seat so that we could easily and safely fit her seat inside any Uber cab that picked us up. I must say on this subject that I know that Uber has had bad press in the past but we have experienced nothing but outstanding service whilst in Orlando. We never waited longer than three minutes for a car to collect us from the point of ordering one. We always received a full description of the driver and the car that were due to pick us up so we never felt vulnerable in any way and most of the drivers we met were lovely, outgoing and bubbly people who shared with us their local knowledge and recommendations. We used them at least twice daily picking us up from International Drive and driving us down to Disney or Universal and the running total that we’ve spent so far (with only two days to go until we depart for home) is around $250 which I think is really reasonable given we have had almost had a driver at our fingertips for two weeks.

Our hotel on International Drive was pretty basic but did the job. It was in close proximity to bars, shops and restaurants at Pointe Orlando, just opposite Wonderworks, so from that perspective it was really helpful to be central. I struggle to walk distances so we hired a wheelchair from a local company who dropped the chair off at our hotel the day after we booked it. This has been invaluable, and given the usual attractions charge for the hire of wheelchairs on a daily basis, hiring a chair from a local company for the fortnight afforded us a huge saving and it meant we had the chair at all times for if we wanted to head out for a walk or go somewhere local.

Given three days before our arrival Florida was battling with Hurricane Irma, we were greeted by a hot, sunny and calm Orlando. Apart from a couple of ten minute downpours, we had fantastic weather day after day after day. With temperatures spiking in excess of 100 degrees on certain days, it was extremely hot – particularly when going around crowded theme parks. I was worried the weather was going to be way too hot for the baby but as long as we ensured she stayed cool, wore her hat, bathed her in sun block and kept her hydrated, she remained pretty happy. There are so many distractions when walking around the attractions that I doubt she even noticed she was hot anyway! I expected her to spend much of the holiday flaked out in the pushchair in the heat but she napped as usual for around thirty minutes twice daily and that was it. I suspect she didn’t want to nap incase she missed something as she loved every minute, particularly at the attractions.

If there’s one thing I despise about the reality of living with chronic disease and disability it is having to ‘give in’ and travel by wheelchair instead of walking. Call me proud, stupid – call me whatever you like but I hate it. My husband and Big Lad were amazing, one took the wheelchair and the other took the pushchair and acted like it was no problem at all but I knew I was slowing them down and it did make everything a bit more challenging at times. It is harder to navigate a wheelchair through crowds of people than it is to walk through. They never complained once, bless them. After a few days we ditched the pushchair and my Little Miss sat on my knee in the wheelchair instead. She was much more settled there as she had a better view of what was going on around her and it meant that I could easily see to her needs (and give her random cuddles and squeezes along the way!).

Disney were incredibly supportive and have schemes and initiatives to ensure disabled guests and their families are not at a disadvantage whilst in their parks. The staff were friendly and welcoming and constantly asking how they could help, and there were schemes that enabled me to access and enjoy certain rides despite being in a wheelchair. I have never been a typical Disney lover, even as a child, but you can’t help but be immersed in the magic of it all. Walking down Main Street at Magic Kingdom, with my Little Miss not knowing what to look at first, her eyes widening with wonder, and my Big Lad who left the teenage angst at the door and instead lapped up the magic and allowed himself to enjoy it as if a young’en all over again, it doesn’t get any more magical than that. Everything about the place is magical – from the dreamy fairytale-esque backdrop to the emotion evoking music, from the ‘Disney smiles’ given by the Disney crew to the smell of the cinnamon pretzels and popcorn – there is no better place on earth.

I was really worried that with Little Miss being only ten months, she wouldn’t be able to participate in the rides and things but I needn’t have worried. Disney make a very real and avid effort to involve even the teeniest of family members. Obviously there are minimum height requirements for some of the bigger rides but the majority of them were very family friendly and we were therefore able to enjoy them all together as opposed to me waiting outside with the baby whilst the boys had all the fun. Our firm favourites were the Little Mermaid ride and It’s a Small World at the Magic Kingdom, the Toy Story ride at Disney’s Hollywood Studios, the Nemo ride at Epcot and the Avatar inspired Na’vi River Journey ride at Animal Kingdom.

We were privileged enough to see a number of the incredible shows put on by the Disney cast. For me, they were some of the most memorable moments of the entire holiday. We saw the Beauty and the Beast live show at the Studios which was really well put together and had both the Big’un and the Littl’un totally captivated. Nemo, the musical at Animal Kingdom was absolutely outstanding – it was so well constructed and the cast and crew made the entire environment inside the theatre come alive through the use of light, puppetry, music and a live cast. It really was quite special. Our absolute favourite had to be The Lion King show at Animal Kingdom though. I absolutely love the theatre and have seen a number of productions in the West End and what we saw there today at The Lion King far superseded anything I have ever seen before. It was an absolute spectacle – a feast for the eyes and ears. It had everything – from gymnasts cast as monkeys to stilt walkers, fire eaters, song and dance. The show was really interactive, drawing on the involvement of the audience on a number of occasions throughout the show which made it all the more engaging. I am going to sound like a total wet mess but the whole show had me in goosebumps and I really struggled not to become emotional as I watched the kids’ faces as they watched it all unfold in front of them. The fireworks were a real hit too. We found it difficult with the baby to stay at the parks until late to see the late night fireworks but we did manage to rejig her routine a little on one night which meant we were able to see ‘Fantasmic’ at Hollywood Studios which is a breathtaking production combining water, lighting, fire, fireworks and a live cast. I would highly recommend making a point of waiting it out til late on at the park to see this show as it was something special.

Prior to coming to Florida I had been more excited about visiting Universal than I had been about Disney and my Big Lad had felt the same. My Big Lad is hugely in to his action and superhero movies, and loves Harry Potter, so he was really looking forward to seeing what Universal had to offer. We visited both parks at Universal and tried a number of the restaurants that made up City Walks, the strip that joined both the parks. Whilst certain aspects of the parks were incredible to experience – such as the Harry Potter world, Simpsons world and the like, I really felt that neither place accommodated families with very young children. We were really disappointed to find that rides that were extremely similar in style to rides that our baby had been welcomed on at Disney, had height restrictions which meant she couldn’t ride. I didn’t realise the scale of the unsuitability of the place until we got talking to a member of staff at Universal who told us that there wasn’t a single ride without a height restriction and that our Little Miss would not be able to participate in any of the rides. I was gutted for her as she had loved the rides at Disney and my Big Lad had loved us all being able to experience things together as a family. However, as I didn’t want this to ruin the fun for the Big Lad, I sat with Little Miss when the boys did rides and we did use the baby swap initiative a couple of times which allowed my husband and I to swap in and out of babysitting duties so that we could both enjoy the ride without having to queue all over again. I joined the Big Lad on a couple of rides as I felt it was really important that we had some one on one time together too but I was secretly really gutted that the four of us weren’t able to enjoy the experience together as we had done at Disney.

Based on my personal experience, Universal also didn’t seem to be as accommodating for those with disabilities as Disney had been. They do have some sort of access initiative but when we enquired about it, the member of staff wanted me to detail exactly what my disability was and how it affected me (in front of a long queue of people in earshot) despite me having formal proof of my disability with me. I’m way too proud to start shouting about my physical limitations in public and so decided to abandon our request for support with access there. As it turned out, there weren’t many things I could go on anyway so it didn’t really matter in the long run. There was a stark comparison between the way both companies managed their guests’ access restrictions though. Disney were incredibly accommodating and extremely friendly with it whereas I felt nothing but a burden or a hassle at Universal. At the end of our day at both parks, even the Big Lad remarked that he would rather spend more time at Disney than come back and finish Universal. The atmosphere and the way in which families are welcomed and looked after are just in no way comparable. I’m glad we went to Universal as it would have been a shame not to have gone along to see what it was all about but we have already agreed as a family that should we return to Florida for a second holiday, we will not bother with the Universal parks and will instead devote more time doing Disney instead.

We had to take a couple of ‘rest days’, or ‘chill out days’ as we prefer to call them, during the fortnight as doing the parks can get exhausting. I would highly recommend spending a day at the International Premium Shopping Outlets which is situated on International Drive – it is an excellent place for shopping. The place is huge and it is filled with huge global high street brands such as Gap and the premium designers such as Michael Kors and Ralph Lauren. Most stores offer a minimum of at least a 30% discount on the ticket price so there are huge savings to be had. As we visited in late October we took the opportunity to start a bit of Christmas shopping and took advantage of the discounts to buy nice Christmas gifts for the family. We are, at this point, not entirely sure how we will get all the shopping home again but och, we’ve got two days to figure that out. We’ll not concern ourselves with that just now!

Staying in the Disney resort is an experience like no other. Everything is just so easy when you are staying on resort. There are complimentary shuttle buses to all the theme parks running every 20 minutes from the hotel and the hotel itself offered fantastic activities such as children’s clubs, special activities and celebrations etc. There are some fabulous dining options on resort, including a character dining experience which we went for a couple of evenings ago. This was really magical, with characters such as Goofy and Pluto joining our kids for their evening meal. Instead of the ‘photo and run’ you usually get when queueing to see the characters in the parks, the characters really spent a lot of time with the kids during the dining experience, communicating with them in their own way and stopping to play peek-a-boo with the baby and fist bumping with the Big Lad. It was really lovely. The restaurant was airy and spacious with a beautiful big tree in the middle and there were only a few other families eating at the same time so the characters just made their way round from table to table, meeting and greeting the families eating there. I think this sort of thing is offered at all the Disney hotels but we experienced it at The Swan Hotel.

What I loved about The Dolphin and Swan Disney Hotels was that it offered a really nice standard of hospitality and service to us as adults. Naturally a lot of the Disney thing is aimed at the children in the family but these hotels were beautifully presented and the rooms so beautiful that it didn’t feel like we were staying in a themed hotel whatsoever. It felt like we were staying in a high end boutiquey hotel and this really appealed to me. I’ve been called a ‘Hotel Snob’ before, and in fairness, whoever said that was probably bang on the money as I do like my little luxuries when I am away from home, and this hotel really delivered. It was fantastic for the kids as there were numerous pools with water slides and kids clubs galore but also nice touches for the adults such as cocktail pool bars, an on site spa, spa bath and so on.

The food is worth a mention. I’ve really struggled with the food. Like, really struggled with the food. The choice and range of food available over here is nothing short of outstanding. Want steak? There’s a steak house over the road. Chinese? No problem, there’s a Chinese restaurant round the corner. You fancy going to an American Diner? There’s five at the complex across the road. You want pizza? There’s a Dominoes within a two minute walk from here. You prefer Pizza Hut? Well, you’re in luck! There’s a Pizza Hut next door! Literally, you name what you want to eat and I’ll bet you there will be somewhere within a very short walking distance in Orlando that does it. You might ask what my problem was then in that case. My problem wasn’t the choice of food on offer, it was the sheer how much of it that is on offer. Everything seems fried or bread/dough based and the portion sizes are indescribable. Many a time over this holiday my husband and I have been reluctant to order two main meals between us because we knew that sharing one between us would be more than enough but it never seemed very fair to take up a table in someone’s restaurant and share one dish between us! At first it was a novelty – we followed the smell of pretzels and churros and fried dough-nuts and we filled our faces with the most delicious tasting treats ever. But after a few days we really felt it. I felt sluggish and bloated and in desperate need of eating something green. It hasn’t been too easy finding something green based and balanced to eat as meals, particularly at the theme parks. It tends to be fried chicken and chips or pizza on the menu. Now, don’t get me wrong, I love fried chicken and pizza as much as the next person but after almost two weeks on the diet , it doesn’t feel so good no more. It’s things like when we ordered an ice cream each to get us through the mid afternoon slump in the peak heat and we received an ice cream as big as our face (and I’m not even exaggerating), I literally felt like crying at the sheer challenge of getting through it all. Americans know how to do food. They definitely do. Everything I have tasted has been so yummy, I just don’t think the scales are going to be too happy when I get back home, I’ve actually reached the point in the holiday where I am now actually pretty sick of the sight of food to be honest and I’m looking forward to getting back home and regaining a better balanced diet.

We are yet to try a water park as yet but I think we are going to give Volcano Bay or Blizzard Beach a try over the next couple of days. I don’t expect there to be much for the little one there but she loves the water so I am sure she will be just happy to splash about in the pool.

All in all we have had the most magical holiday ever. I can’t believe that in a couple of days we will be back on the plane to fly home but it has been just the most amazing holiday from start to finish and I would recommend it as a destination for anyone with a young family. Our Big Lad is almost 15 and he lapped up every second of the magic but I do sort of wish we had brought him over when he was a little younger. Before we came here we kept referring to the holiday as being a ‘once in a lifetime’ holiday. Within days we were no longer calling it a ‘once in a lifetime’ because it became very obvious that we loved the place just too much to only visit it once. We are determined to return as quickly as possible and have already decided that we will stay on resort in a Disney hotel for the entirety of the holiday next time.

We have made the most amazing memories with our beautiful family; memories we will hold dear to us for many a year to come.