Reflections on 2019

Warning: this post contains religious thoughts. If you aren't happy to read those, just pass on by. I won't be offended.

I saw two similar Facebook posts yesterday, both asking what we are grateful to God for in 2019 and what we are hoping for in 2020. I always think gratitude is a good discipline to have, especially when things aren't so good. So I thought it would be good to genuinely reflect on this and write something meaningful on the theme of gratitude and hope.

2019 - gratitude

Andy and Ruth's wedding

Forever photographically etched onto my brain, is the image of Andy's face when we told him we had to move back to the UK. The fear in his eyes matched the pain in my heart. Andy and I moved back on 14th June 2013. The first Sunday back, we went to church and that morning, Andy met Jonny. Almost instantly, they became best friends. It turned out they were both starting sixth form college in September and that was where Andy met Ruth. Jonny and Ruth had been friends for many years. It wasn't long before Andy and Ruth were dating.

When Andy gave his speech at the wedding, he talked about the time they all met and how Ruth saved him during this most difficult time in his life. The wedding itself was just beautiful. There was a strong focus on this being a marriage of three... no not Jonny... a real acknowledgement that God was in this marriage too. Given that Jonny was not able to be at the wedding, which was live streamed to the ward where he was having yet more chemo, I felt that the whole day was a real statement of faith. Their relationship, their friendships were based on some of the real tough stuff of life, and yet Jesus was still at the centre of it all. It is lovely when our prayers are answered the way we want them to be, but I think there is something utterly amazing that happens when we stand on our faith even when life doesn't dish up what we ordered.

So the first thing I am grateful for is Jonny and Ruth and their respective families. 

New job

In September 2013, I started studying for my Master of Arts in Online and Distance Education (MAODE). I graduated in May 2018 and began looking for a change of career - a move from teaching into eLearning design and development. 2019 began knowing that I was starting my new job at the end of January. Whilst learning a completely new role hasn't been without its challenges, I love what I do now. I particularly enjoy the nature of project work, seeing a whole project from beginning to end and having a finished product that I can be proud of. 

I was a little shocked that almost immediately after starting this job as a junior learning designer, both of the seniors left. I was even more shocked to find that when I mentioned possibly applying, the manager practically bit my hand off. So after 5 weeks in the job, I got promoted and have been working with our main client almost all year. 

I think many of us will have undertaken some form of eLearning - GDPR, health and safety - at work. Somebody obviously created all those generic training packages. That's unlikely to have been me. I make bespoke products for a very specific client group. So when they identify a gap in knowledge or a working behaviour that needs to change, they ask me to build an eLearning package on that theme. Sometimes those themes can be quite difficult and challenging stuff but I like knowing that real people doing a very difficult job will be using what I produce and that it will help equip them for the daily realities of their role. 

So the second thing I am grateful for is my new job.

Family and Liggy

It sort of goes without saying that I'm grateful for my family and friends... but this year, I have felt it more than usual. In the years following my cauda equina syndrome, adjusting and adapting to living with a disability, I have gone through something that is referred to as the grief cycle. This is often presented as a graph - a nice, neat graph with a start and end point. It goes up, then down and finally goes up at the end. This has not been my experience of grief and disability. For me, it would be more like drawing the two axes for the graph and then handing a 3 year old a pencil. My grief cycle has been more of a scribbled mess than a nice neat graph! Sure, there have been many good times, positive times, times of achieving things... but there has also been pain, physical pain, tiredness, frustration and fear. At those times, it has been so important to have my family around.

I'll start with Neil and Liggy. They are with me all the time and enable life to go on, with a reasonable degree of independence. I honestly cannot imagine life without them both. I often think back to our wedding and that promise to love in sickness and in health. This situation, though related, is neither. I'm not sick but it's not health either. Sickness either gets better or ends your life. Disability is different. It doesn't get better or worse... you just have to eventually come to terms with its permanence. Of course, as a Christian, I believe in healing... I've seen healing... but God doesn't heal everyone of everything. That has been part of my journey but is too personal to share. All I will say is that I have peace with the situation as it is and am confident that God will use it rather than remove it. In living with this, Neil and Liggy have been my constant support and strength. Neil somehow juggles the very challenging situation of being 100% husband, 100% carer and also working full time. I honestly don't know how he does it! Liggy has the advantage of being all dog. She never tuts, sighs or shows disapproval. She just picks up after me, dresses and undresses me and looks into my eyes with love as I shovel fishy treats into her mouth. It's a beautiful relationship!

My wider family play a different role. I sometimes feel that nobody just treats me like a normal person. Nobody knows the real me. Nobody expects me to achieve anything. My family are different. They know the real me... the me that is nothing to do with sticks, crutches and wheelchairs. When I cross the road for no apparent reason, they saw the big bunch of nettles and understood why I crossed. When I come in from the garden, faster than my legs or wheels will carry me, they know that a wasp appeared three gardens down the street. They know the good stuff too. They know that I can teach a child to read and write and do maths, even when everyone else has given up on them. They know that once I have decided to do something, I will fight to achieve it with everything in me and will stop at nothing to do what I believe is the right thing to do. My family always start from the assumption that I can, whereas most other people start by assuming I can't. 

My family has been through everything. Love, separation, divorce, remarriage, halves and steps - so many you forget who is who... and yet, we all get on well, enjoy spending time together, somehow negotiate the minefield of various allergies so that nobody gets sick from a family meal. And there is so much love. That's why I am grateful for my family. I should say 'and friends' but to me, my closest friends are family. Family can't just be about blood. If it was, I would have a very small family. But I don't. I have a big family!

So finally, the most important thing... I am grateful for being part of a big, loving family.

2020 - Looking forward

The question asked was what I want God to do in 2020.

Jonny

Andy's best friend Jonny is still in hospital and although there is light at the end of the tunnel, he's still very poorly. If God only does one thing this year (which I seriously doubt) I would love to see Jonny fully recovered and back to his usual cheeky self. I can't wait for that day when we do something fun... all of us together. There will be food, music, laughter... and most of all, loads of banter!

Church

Yesterday, we went to our eldest son's church, the church we went to when we first moved back to the UK. It's just that bit too far for us now. It's a 90 min drive minimum each way. The welcome we received was amazing though. When this was our church, we were fully involved in the life and community there. Although I regret that I never joined the worship group, as that is where my heart really lies, I did youth work, led parenting courses, just normal stuff. It's also a church full of normal people. I don't mean normal Christians. There is such a mix of people there... including a seriously nutty element. What they lack is Kelloggs people. You know what I mean? Like the Kelloggs adverts - mummy and daddy and 2.4 children, all sitting down together for breakfast. The perfect family! I don't think there is a perfect family there. It's a place where it's okay to just be who you are. Vulnerability and reality are important, and that leads to the kind of hugs we got yesterday... the kind of hug that whispers a thousand words... that communicates that I have missed you soooo much! I've been through something and I wish you'd been here to walk through it with me... 

We're kind of settled in a church. It's a nice church with lots of nice people. We know people... their names, at least. I wouldn't say we're involved though. We visit on Sunday mornings. That is partly because we meet in a rented space. We don't have our own building yet. But maybe it's also because the church lacks nuts. I don't think we have a non-normal element... and that disturbs me slightly. 

So in 2020, I would like one of two things to happen. Either a miraculous move back to where we used to live, so that we can move back to nutty-land. Or for our church to reach out to those who haven't got it all together... the hurting, the vulnerable, those who are mentally ill, those who have nothing, those who really need a saviour. 

Looking further ahead, the fact that we have to drive a minimum of 45 mins (30 miles) to access an Elim church, just seems wrong to me. I would love to see a day when every Elim church... when every church... is accessible. It's not just about step-free access, though that would be a good start. Toilets, the auditorium, the style of the service... not just for wheelchair users but for everyone... Yesterday, we witnessed a church where so many people had physical impairments but they could get in and access church. That's what all churches should be like. Jesus did once allude to the idea that it's those who haven't got it all together that need him most. It seems wrong that our buildings so often shut out those who need him most... and where the buildings don't, the people sometimes do. 

So what I want to see in 2020 is an improvement in accessibility to church, not just for me but for everyone.

Contrasting trips

I have undertaken three trips away in the last two weeks, and they have really highlighted the difference it makes when access has been thought through.

Trip 1

The first was a two day (one overnight) visit to one of our clients. I drove both ways (about 260 mile round trip and although not everything went according to plan, on the whole, it was a very positive trip. So what made this trip go so well?

Planning

The trip was planned well ahead of time and I was very clear about my needs, particularly regarding the room for the night. I let them know in writing that I needed a wet room, level access, and that Liggy would be with me. The client knows me well and did her part in ensuring that every meeting, activity and meal would be in a suitable space. 

Responsibility

As I said, not everything went to plan. In spite of measuring my wheelchair, there was part of a corridor that was too narrow and this made accessing the accommodation difficult. However, our host immediately took action, was very apologetic and ensured that alternative access was in place as quickly as possible. 

Training

This venue was very busy. There were lots of people there for all kinds of different reasons. There are also many working dogs on site, and because of this, everybody knew not to distract Liggy and to largely just ignore us. It was possibly the first time we have ever been in a packed restaurant and had to queue for ages, and nobody tried to pet her or even just stare at her. I wish the whole of society was this well trained and self-disciplined. They were brilliant!

Trip 2

My second trip was also just one overnight and was more of a personal outing. We were booked to speak at one of the Canine Partners carol services on the Friday evening. The venue was beautiful but also not without some challenges but it was a wonderful evening. Then we spent a night in a hotel before spending the whole of Saturday at Chatsworth House.

Fitting in

I always enjoy Canine Partners events! There are other people with mobility challenges and lots of other dogs. It could be difficult with getting everyone in and out and managing all the dogs, but it just works. The dogs are dogs so they usually want to greet each other and all the owners but they are all quite used to knowing when it is time to settle down and lie quietly. If your dog needs a bit of time out, everyone understands that. If you ask someone to leave you alone for a bit, they don't get offended. They know what it's like. I always feel more normal at these kind of events. People (disabled and otherwise) get in and out of wheelchairs and nobody thinks they are faking it. It's just normal life. And I feel normal, which is nice.

Accessibility is a choice and is usually possible

The church was part of the Chatsworth Estate and we also spent time in the house and gardens. It's an old building. It's a listed building. It's quite hilly. There is every reason why they could pretend that it's not possible to make it accessible. However, it is one of the best places we go for access. The staff are well trained and so helpful! The building and gardens are wonderful! We all had a really relaxing weekend.

Trip 3

The final trip didn't go so well. Granted it was 4 days (3 nights) so longer away, and Neil wasn't with me, but there were lots of things that spoiled it and shouldn't have done. It was a work trip but it wasn't work that was the problem, mostly. It was just general stuff... but it all happened at once. I will say it was Edinburgh. If you have to travel there and have access needs, just plan a bit more carefully, just in case.

Food

Okay so food is always a bit of a nightmare for me and only other people with allergies really seem to understand. My drama started on the first evening in the hotel. I'd booked dinner and was looking forward to an evening with my colleague who had travelled with me. My allergy is a natural food colouring (carotenes) which isn't on the usual allergen list. I looked at the menu and picked the nearest meal I could find to a possible option - salmon with hollandaise sauce, new potatoes and mixed green veg. I was fairly sure that if I omitted the sauce, I'd be fine but I thought I'd better check that the greens didn't include kale or spinach (which, as it happens, they didn't) so all should have been well. 

Asking the question caused all hell to break loose! The waitress couldn't take my order (my colleague appeared to turn invisible, as nobody took his orders for the rest of the evening!) so had to get her manager. He turned up with the allergy book and seemed a little put out that I had the audacity to have an allergy they hadn't got on their list. I explained that I know what it's in so just need accurate information but this didn't really help. After several return trips to the kitchen and pictures of ingredient lists on his mobile phone, he eventually took my order. This all took 30 minutes.

We waited and he returned with a laminated disclaimer which I had to acknowledge so that if I died it was my own fault. Then he returned to inform me that they had to cook my meal from scratch so they didn't contaminate it. That would take another 30 mins. During that time, my cutlery was confiscated and replaced with clean ones (I would rather hope for clean cutlery anyway)! Eventually we got food but by then I was very shaky and didn't really enjoy my meal at all. Plus I felt like a leper!

All this was repeated for pudding, which I wish I'd not bothered with but had paid for in advance.

The next night, I decided to eat elsewhere. I'd seen a KFC (surely you can't go wrong with KFC) and decided to walk there. I set off but as I got closer, realised it was in the middle of two roads off a very busy roundabout. I got closer before realising there was no crossing and no dropped kerbs. I ended up buying a weird concoction of items from Tesco and eating in my room. Again I didn't enjoy it.

The last night, I preordered the exact same meal that I had on Sunday, as it seemed the most likely way of getting food. The meal was okay but I still felt like a leper and had to have my cutlery confiscated.

Edinburgh doesn't do dogs?

I managed with Liggy at the hotel and there was plenty of grass around for toileting, though when I asked on arrival (because it was dark outside) the lady on reception told me there was no grass but they had an accessible toilet. I asked her if she was sure she wanted Liggy to use a hotel bathroom and she finally twigged. Not sure why she thought I would want to pee/poo outside, but hey ho! Liggy was on best toileting behaviour (thankfully) and peed and pooed very willingly on demand. I always have bags and pick up and put it in a.. Where are you supposed to put it? There are no bins... anywhere. The hotel was opposite a railway station in a busy area. Only one bin and that was well out of reach for me, behind a load of tables. It was a letterbox style bin and literally the only one. I tried to aim but my aim isn't what it was. I even told the staff, in the hope they might move the bin or the tables... but no. They seemed quite happy for me to aim badly and leave them little black bags of poo all over their decking. 

The area around our offices was even worse. No grass, pebbles or bark anywhere, except the cemetery. And absolutely no bins. Day one, I took Liggy in the cemetery. She only peed. There was a sign banning dogs but assistance dogs should be exempt, right? Day two, they had chained all the gates shut. The weather was also foul that day, and I had to try to persuade a dog that is trained to not just pee/poo anywhere, to go anywhere.

Blame the weather

On the final evening, by the time I got back to the hotel, I had had a very difficult day. I'd hurt myself several times trying to overcome barriers that should never have been an issue and I really just wanted to eat my preordered salmon and go to bed.

Traffic was awful and I dropped a colleague at the airport, so I was whacked out when I got back. I got my chair out and assembled it and headed for the door... only to find the whole entrance fenced off. Eventually I realised I was going to have to wheel all the way round the building to the other entrance, so I set off, less than happy. 

In the car park, they have spaces for coaches. A lorry was parked in one but the front of his cab overhung the pavement, blocking my way. Once I'd got Liggy fed, I asked at reception what had happened and whether they knew whether it would be fixed by morning. I was really concerned about how I would load the car by myself. Without the diversion, it's very difficult. With it, I was worried that I would end up even more hurt and my pain levels were already sky high! 

The man at reception seemed very angry that I had the cheek to ask and immediately defended the hotel, blaming the weather. I know he can't control the weather! I'm not stupid! I just thought he might know whether it was just a precaution or the building was falling down, or somewhere in between. I guess I was also hoping for a pre-emptive offer of help in the morning. Not likely! Fortunately, when the time came, a different chap was there, who was considerably more helpful and kind.

The weather caused other difficulties on the drive home. Automatic doors at one of the service stations were broken (but left closed, rather than wedged open). At another one, a path was blocked by a sign that had blown.

I get that weather can't be helped but this really was just a windy, rainy day. We live in a country where wind and rain happen, not just occasionally but often. So why can't we build buildings that don't have flimsily attached metal bars on the side and cover motors with some kind of insulation to protect them. I'm pretty sure that if aeroplanes were built with so little care, people would start complaining! And if the weather does cause problems, would it be beyond the wit of man to think through access for people like me? Would being helpful and kind be so difficult?

Election

I woke up this morning to find that our pretty good Tory MP, Andy Percy, has retained his seat. I've never been a Tory voter but he did me the courtesy of engaging in a brief conversation on social media last night. I don't even know how I feel about the election result but I do know this...

There are too many battles to fight. Whilst Edinburgh made me angry and caused more physical pain than I should have to endure, there's no point in wasting my energy fighting battles so far away. Andy Percy promised me he would raise issues that affect our local area. I am going to decide what are the most pressing issues and try to get his help in fighting some battles. Because life can be easy or difficult for people with disabilities of all kinds. We can blame the age of the buildings or the weather but at the end of the day accessibility is a choice. Those who are in power either care or they don't. Society either cares or it doesn't. 

I see a repeating post on Facebook. Loads of my friends share it. The idea is that if I'm ever suicidal, they will stay up all night to listen to me. They will be there for me. They care. They all claim this applies to everyone... strangers even. I don't need you to stay up all night. I just need you not to be the last straw. And I think that applies to all of us, but definitely people living with disabilities. Just try to make life easier sometimes. People seem to like to be seen to be helping. That's sometimes great but even better to build a society that enables people to manage without help... without getting to the end of their rope. 

Accessible hiking in the Cairngorms - Strathspey Railway

Continuing my series about the Cairngorm National Park, I'm going to combine a couple of days into one. We had intended to hike from Aviemore to Boat of Garten and get the steam train back. That's not quite how it worked out but we still enjoyed a couple of nice days out.

Strathspey Steam Railway

The stream trains run from Aviemore's main railway station and go to Boat of Garten and Broomhill. You can travel standard or first class and there are various dining options available. If you need wheelchair assistance, they prefer you to book in advance but we just arrived early on the day we wanted to travel and we were able to buy tickets for the next train. 

Pricing seemed very fair to us. Wheelchair users get a third off and a carer can travel for free (standard class). If you need to travel in your wheelchair, the only option is to travel in the guard's van, and they don't charge then for either you or a carer. We planned ahead, took my crutches and travelled in a standard coach. They put my chair in the guard's van so I could get off at the other end and have a look around. 

Assistance dogs

They allow dogs to travel on the train, and assistance dogs are no problem either. We would have liked to treat ourselves to first class but they don't allow assistance dogs in first class. When I asked about this, first they said it was because of food hygiene but when I asked more and explained that assistance dogs can go in restaurants, then they said it was because of space in the compartments. We had a look later and I'm not sure I buy that, as there is more space in first class than the standard coaches, but we were still able to travel and neither of us wanted a fight.

It was Liggy's first trip with me on any kind of train. She laid under the table and was very well behaved indeed. Getting on and off was a little tricky as the floor was slippery and she was excited and trying to negotiate my crutches through a narrow doorway with steps. 

Toilets

There are no accessible toilets on the train or at Boat of Garten but there is a good one in Aviemore and a half measure in Broomhill. The one in Aviemore is small but there was room for my chair and there are rails and stuff and level entry. At Broomhill, you have to wheelie up a small step to get into the ticket office/shop. Then entrance to the toilet is very tight - another passenger helped me move a table out of the way. Inside the toilet, there are no rails, so getting off the loo was a little tricky! The sink is just about within reach, though I'm sure they wouldn't want it pulling off the wall, so if I was them, I'd at least invest in a free standing toilet frame.

The stations

At Broomhill, it is worth getting off and having a potter around. Some of the platform is gravel though, so getting a close look at the engine requires a bit of determination! 

Parking and getting to the platform

There is parking at all stations. In Aviemore, to access the right platform, you have to go round the back to the main car park, as access from the town centre is only via a footbridge with steps. There is blue badge parking and then you have to cross the railway line and go up a ramp onto the platform. I found this easy enough to do independently. 

If, like us, you go and park up, buy tickets and then discover that you can't travel in first class where you would get food, you can go and get lunch to take on the train. It's a fair walk round into the town centre, back down the entrance road, under a subway and back into town. Tesco and M&S both do decent meal deals. We had plenty of time on our side so it wasn't a problem doing this.

Hiking between stations

There is a lovely wide track which allows walking and cycle access between Aviemore and Boat of Garten. Technically, it is wheelchair accessible, but I would want to qualify that. The early section of the walk goes through a residential estate, which lacks dropped curbs, so I ended up wheeling on the road a lot. It wasn't busy and I was comfortable doing this as Neil walked behind me and let me know when to stop and wait for passing cars. 

Signage

At the beginning, there is a sign showing that Boat of Garten is both left and right as you come under the railway subway. That is because one way is for road users and one is off-road. We went for the off-road option. It shows 6 (miles, I presume). We set off and although a little hilly, it was a nice enough path. After the initial sign, it assumes you know to follow 'route 7' cycle track. 

As you come out of the residential area (Silverglades), you go through a golf course. There is a new sign, showing 4 miles to Boat of Garten, which is really encouraging, as you think you're a third of the way there already. 

At the golf course, the path turns into a forest area with a lovely wide dirt path but some evil hills! Neil had to help me with some of the steepest parts. You go for what feels like miles because of all the ups and downs and about half an hour later come to a new sign... which shows it is still 4 miles to Boat of Garten. WHAT?!! My arms and shoulders were exhausted by then, and we had passed a sign to the golf club house which is open to the public. There are no toilets on route, and I was getting to the point where I needed one, so we turned back and went for coffee and a wee instead.

Later, we noticed another sign, about a mile before the first sign (6 miles) which also stated 6 miles to Boat of Garten. We can only presume there is something psychological going on here or they have some significant rounding errors!

Asking about paths

When we set off on this walk, we did stop a couple of people who were coming the other way, and asked what the path was like. We were told that it was wide, smooth (concrete) and pretty level all the way. This theme came back later in the week. My advice is not to believe anything people tell you. Walkers have no idea whether they are on the flat or hills. They are utterly oblivious!

Our original plan

So our original plan was to hike one way and take the train the other. Would this have been possible? Firstly, I believe Boat of Garten is higher than Aviemore, so if we were to attempt this, we would get the train there and hike back. It would still be hilly but hopefully more down than up. 

We would also need a toilet plan. I have a she-wee but I don't like using it. Just because I technically could stand up and have a wee like a man, doesn't mean I want to. So then I'm tempted not to drink anything, so that I don't need to go, but on energetic hikes like this, I would need to drink. There is no accessible toilet at Boat of Garten either, so I couldn't go before beginning the walk section. 

If we had an answer to the toilet issue, in theory, I reckon we could take our time and hike it back. It might be more doable if we had a group of us - say if our sons were coming too - as then there would be more help available on the steep hills. It would also be easier, later in the winter or early spring, when my muscles have built up again. I barely do any exercise between June and October, because it is too hot and then there are too many wasps flying around, and nettles blocking my way. That means that in October, I am probably at my weakest, physically. 

On the plus side, if I did attempt this, I would need my mountain trike and we wouldn't be able to carry my crutches, so I would have to travel in the guard's van, which would be free. So we would effectively get a day out for just the cost of lunch. Bargain!

Accessible hiking in the Cairngorms - the mountain itself

It's difficult for website owners to give accurate information about wheelchair access because all wheelchair users are different and there is so much variation between different types of chair. We recently spent a week on holiday in Aviemore, Scotland, exploring the area and enjoying some fresh air and exercise.

So how did the area perform in terms of accessibility? Here are my thoughts on some of our days out.

Cairngorm Mountain

I first visited the mountain a couple of years ago, when I had some adaptive ski lessons with DSUK. They have since left the area, in part due to the closure of the funicular railway. In the last week, we have been up the mountain at least three times. There is parking, including plenty of blue badge spaces, a cafe with accessible toilets and an exhibition, telling the history of the mountain. 

Parking and getting in

We found parking really easy, but that could be because it's a quiet time of year. Having said that, it was easy in the middle of the ski season too. What is not so easy, especially as a manual wheelchair user, is getting from the car to the cafe. It is a mountain, so of course you have to expect some steep slopes. It really is quite steep in places and the ground isn't particularly smooth. Once you get near the buildings, the ramps are pretty good, though still steep. Inside the buildings was a doddle though, with big wide doorways and smooth floors. 

Exhibition

I thought the exhibition was great for access! There was plenty of space, nice clear displays and a couple of videos that were easy enough to see. If they ever get the funicular railway running again, I can vouch for good access there too. I was able to board and get off independently, as there is level access. There is a charge for the exhibition but carers go free.

Cafe and staff

We found the staff to be extremely welcoming and friendly! We arrived on a miserable sleety day. It was wet, windy and freezing cold! Nevertheless, a lovely old chap was standing outside to greet visitors and point them in the right direction of the exhibition, cafe and toilets. 

I was really impressed with one guy in the cafe. We were sitting, having a cuppa and a young chap came over and asked whether I had skied there a couple of years ago. He had helped out for one of my lessons. He was basically the route leader, who I followed, so I didn't get lost or into difficulties. He recognised me and remembered from two and a half years ago! That is pretty impressive! 

Outside

Most of the paths in the area are gravel and steep. I did manage to get around in my normal chair but it was hard going and a little scary in places. Neil took Liggy to explore the stream and have a sniff around. I managed to get down the gravel slope but going up, I had to use my ski technique and do a zigzag path, whilst simultaneously pulling constant wheelies. 

Activities

At this time of year, the only real activity going on is tubing, which I didn't attempt. For me, whilst it would be great fun, I wouldn't be able to get from the bottom to the top and I would almost definitely get hurt. For the more able, there are hiking paths, but these are well outside my capabilities. Photography though, is doable and the scenery is outstanding! We had a variety of weather conditions, from snow to sunshine. Here's a selection of my favourite pics.

Good... better... best

When I was in teaching, there were fashions around how we marked children's work. I can't remember what it was called, but one of them worked on the principle of good... better... best. It went rather than this.

It's good that you used adjectives to describe the characters. It would be better if you thought of some more interesting adjectives. What is the best word you could use to describe dad, instead of 'nice'?

This week, we had our two team away days. Because we are having some building works done at the office, there were no meeting rooms available and we had to go offsite. So we booked a room at the local Toby Carvery. Neil and I often use Toby Carvery for meals out, as they are generally okay from an accessibility point of view. That thought triggered a marking process... So here I go, marking Toby Carvery on their accessibility. Of course, they might vary, so this is just the one we were at this week.

Good

It was good that:

• you had plenty of accessible parking spaces, with hatchings on both sides
• the car park is well surfaced
• there was a ramp on both sides of the steps to get up to the front door
• there were no steps inside the building
• there was enough space to get around the building in a wheelchair
• the staff were very helpful but not patronising (they were particularly good at not assuming I'm incapable of doing things for myself)
• staff interacted appropriately with my assistance dog - welcoming but left her alone to do her job
• the accessible toilet had a radar lock
• the accessible toilet was clean and spacious
• the carvery area was wide enough to get through and was clean
• the lady who greeted me found out allergy information for me quickly and accurately.

Better

It would be better if:

• the ramps were smooth (asphalt) rather than higgledy-piggledy paving stones
• the front doors were automatic
• the carpets were replaced with wooden floors (easier to clean and easier to propel over)
• the toilet roll holder allowed the toilet roll to go round, instead of you having to bend at a painful angle and put your hand up inside it and fight to get any toilet roll
• the highchairs were not stored right outside the accessible toilet.

Best

If you want to make your business/service accessible for wheelchair users, what is the best thing to do?

For me, there are only a few things you need to think about:

• Parking and getting inside - consider electric and manual wheelchairs, as well as assistance dogs. Wheelchair users do need more space than you might think. Many places have double doors. Please don't lock one of them! Wheelchairs generally need to open both.
• Moving around the building - again allow more space than you immediately think is necessary. When positioning tables and chairs, think about the space that is left when a large person is sitting at the table, rather than when the chairs are pushed right under. Also be aware that self-propelling over carpet is rather like expecting you to wade through knee-deep treacle. It is hard work! Hard floors are better.
• Staff attitudes - training is essential! All staff should know how to communicate in a way that is helpful but not patronising. Please remember that we get through normal daily activities every day. Things that you think are difficult might not be at all difficult for us. Don't assume we need help with every little thing but be willing to help if asked.
• Toilets - it should be obvious but we need to be able to get to the toilet, into the toilet and out of the toilet, without any obstacles or barriers. Remember that many wheelchair users have limited movement, so putting toilet roll behind the toilet or in an awkward place can cause big problems. Also remember we use our hands to propel, so if the hand dryer is broken, please put a sign up. Once our hands are soaking wet, we're stuck. It's very difficult to propel with sopping wet hands! Make sure the toilet seat is secure, sudden movements can be agony for back injuries. Same with grab rails - we use them because we have reduced/no lower body strength. They need to be able to take body weight without giving way. Toilets need to be clean. Making the toilet roll easy to use helps with this. We don't like sitting in pee on the seat and cleaning it is probably more painful and difficult than for an able-bodied person. Radar locks prevent the toilet being used by everyone. This helps keep it available and also helps keep it clean.
• Assistance dogs - it should go without saying that you can't deny access to an assistance dog, and they don't have to sit in the dog-friendly area. We may deliberately sit away from other dogs, so that the assistance dog isn't distracted by them. It's nice to be offered a bowl of water, though many owners will bring their own bowl. If you want to be extra helpful, consider providing toileting areas. There are 3 likely surfaces that assistance dogs prefer to toilet on: grass, pebble or bark. How hard would it be to provide a small area with each of these? Oh... and a bin nearby to put our little black bags in!

Do you notice which of these areas is the biggest? After making access into the building possible, if I was an owner, deciding on priorities, I would prioritise the toilets. It seems a small thing but makes a huge difference! Most restaurants only have one accessible toilet but several ladies/gents. Having two accessible toilets would be best. That way, if someone is already in there (especially if it is also the baby change) there is an alternative. Also, if something goes wrong and one becomes out of order... well it's obvious!

What does equality look like for me?

I nearly wrote something yesterday but I wanted to think about what I really want to say. I'd seen an article about churches that have ministries aimed at disabled people. Very sweet but it didn't sound very inclusive or equal. It gave me a sense of being different and that I need to be looked after. That's really not me! I think their motivation is loving but it indicates a faulty view of people like me.

Today, I saw an article that referred to a hate incident that happened to a chap I follow on Twitter. He was at a garage and someone hurled a stream of abuse at him, saying, "Boris is going to deal with "all you f.....g disabled scroungers!" Unlike the church example, this one was fuelled by hate, rather than love... but it still contained the same message - that disabled people can't provide for themselves and that we need to be looked after.

So what I want to communicate is actually from the opposite angle. These are examples of how we are perceived (with good or bad motive) as being different. And okay, I am different. We're all different in one way or another. It's not just about church, although it has bemused me at times that I feel more equal at work than in church. Maybe that's because I'm at work for 40 hours a week and at church for 2. It's about the whole of life and what equality would actually look like.

Access

For me, the biggest issue is always access. Can I go where everyone else can go? Can I do what everyone else can do? Can I access life as an equal?

At work, I would say mostly, yes. I can get into the car park, park in a space that is wide enough for me to unload my chair and Liggy. I can get into the building quite easily, move around the building, including the kitchen. There is an accessible toilet - okay there are some frustrations there, as I spend a disproportionate amount of time waiting to get in there. Maybe there should be more accessible toilets if so many people need them.

When I go shopping, most places are accessible. Supermarkets are mainly okay, though they could improve our local Morrisons by having one wide aisle that isn't a double aisle. I feel rather self-conscious when I'm waiting in the checkout queue and someone next to me could move on but can't get their trolley past me.

Clothes shops can be a pain. I can usually get in just fine but often the rails and displays don't allow me space to get round. The same goes for places like Savers. Their products might be cheaper than Boots' but I can generally get round Boots and not Savers.

Church is a mixed bag. It's not our building so in some ways, we can't influence the things that hinder access. While we're there churching, there are swimming lessons and most of the parents park in the blue badge car park, rather than walking 100m to the main car park. They park too close together for me to get a chair through, let alone Liggy next to me. They create spaces that don't exist. Honestly, it irritates Neil more than me but it does reduce my access, particularly when leaving at the end.

Inside is fine. The toilet is good (got a heated seat!) There are no carpets, which makes my life very easy. The doors are automatic or left open. It's split level but we've got a ramp that I can use to get to the lower level, if I want to. I don't usually bother though. The ramp is very close to the edge and I'm rather protective of my knuckles... and Liggy could only go down and not up, as she's on my left and the ramp touches the wall on one side. But if I really needed it, Neil could shuffle it around a bit and it would do its job.

Perception

I'll be honest, the only place where I feel really equal in terms of perception is at work... well, and at home. Home should be a given though. At work, people just treat me exactly the same as everyone else. They expect equal standards from me. That was the same in my previous job too. It's sometimes harder to get the right job as a wheelie, but once in, the chair makes no difference at all.

Out and about, shopping, eating out, etc. I usually feel equal. Sometimes people will give the impression that I'm less until they talk to me or get up close but then they realise I'm okay. It's just my legs aren't so good. The exception is when my tremor is bad. Then sometimes people think I'm drunk or terribly nervous. That doesn't make me feel very equal but I can understand it. If they hang around long enough or if they ask, I'll explain that it's a neurological movement disorder. I sometimes explain it as being Parkinsons in reverse. Essential tremor is when using the limb, Parkinsons when resting... also less harmful, but just as embarrassing.

In church, some people treat me like a normal person. They don't assume I need help with everything or that life must be terribly difficult. Others... I'm not so sure. I still occasionally get people expressing surprise or shock that I actually have a job. I get people assuming that if Neil is not with me, it must be more difficult. I get people assuming that moving around is difficult or slow. I try to be patient but it's frustrating how little they really know me. Again, it's all motivated by love but the message is that I am somehow less of a person.

Space

Space can be connected with access but I don't mean that kind of space. Personal space is important too. This is where I admit, I'm not equal. I take up more space than a non-wheelie without a dog. Wherever I go, I take up more space. If I go out for dinner, I need two spaces - enough for a wide chair and Liggy's bed. In church, I need enough space to sit comfortably but also space to move... to go to the loo... to get a coffee, etc.

Personal space includes what is going on around my head and face level. If a group of people are chatting, they don't tend to stick their elbows up in front of other people's faces. They don't put their bags in faces and they generally don't lean on each other, as though free standing is just too tricky. Yet when I'm in a group, having a chat, I am often distracted my someone's elbow just inches from my eyes. If they were to turn suddenly, I'd get a black eye. Of course, they'd be all apologetic and it wouldn't be intentional, but that wouldn't help me much. It would be easier if they began with a bit of spacial awareness.

It's the same for Liggy, she has been trodden on twice now, in such a way that she was hurt. Both times were in church (different churches) and both times by people who were just oblivious to their surroundings. Maybe that's why I like a lot of personal space, especially in church!

Leaning on my chair is something that makes me feel quite sick. The movement it produces causes pain in my back and makes me feel seasick. Plus, it's widely acknowledged as being extremely rude. It doesn't happen a lot now, as I don't have handles on my chair but still some people seem unaware that they are even doing it. The only people who are really close enough to be touching are my close family and best friends. Neil - fine. Josh/Andy - fine. My mum - fine. Pretty much anyone else - not fine.

I'm not equal but I don't want to feel like less

I don't like it when a situation or a person makes me feel like I'm less of a person or have less rights to exist than others. However, I acknowledge, there are situations when we're not equal:

• I can travel more quickly than you (unless you are a jogger/runner/cyclist) so if you hear me behind you, you might want to move over and let me overtake.
• My upper body is much stronger than that of the average middle-aged woman (so don't give me cause to sock you one!)
• You need a degree in civil engineering to take my chair to pieces and reassemble it. I have this skill. You probably don't. Don't feel bad about that. You can probably do deckchairs. I never mastered them. 
• I have awesome problem solving skills. That's because society makes me practise them every day. So don't expect me to be easily defeated.

Words, names and labels

I should start this post by confessing that I don't have a set of thoughts with a conclusion yet. This is just a topic that has been raised recently at work, in the news and as I have pondered life.

Words

There are almost as many sayings out there as there are words. There seems to be universal acceptance that words are powerful. The words we use have impact. They can change lives and situations for good or bad.

I think most religious texts have some reference to the power of words. The Bible has much to say about the power of the tongue. It compares it to a forest, set on fire by a small spark. Just one word can trigger a powerful reaction.

I also found a Korean proverb, "Words have no wings but they can fly a thousand miles." I guess that was written before the Internet made it explicitly true.

Names

Say it with me. We all know the rhyme.

Sticks and stones
May break my bones
But words will never hurt me.

I'd like to use a rude word here (or several) but I'll exercise a modicum of self-control. But really? What a load of rubbish!

In days gone by, and even today in some cultures, names are very important. Babies are given a name that means something and is an indication of what their parents are hoping and praying for. I have a friend in Finland who had a baby and the name they gave him means 'king'. This is not a child who should grow up feeling insignificant! When I was at school, I had a friend called Helen. We looked up what our names meant in a book and it said Helen meant 'horse'. I hope she found out one day that the Greek meaning is really 'shining light'. My name means 'overcomer'. I wonder whether I was given it prophetically or whether actually, we subconsciously become what we are called.

When I was a child, somebody gave me a nickname. They called me it most of the time. I had no idea what it meant but something should have warned me that it wasn't kind. One day, I did something really stupid! I asked them what it meant and why they kept calling me it. Their reply caused more damage than any physical injury could ever do. Their words hung over me like a dark cloud for years and years. Even now, on my darkest days, those words come back and I have to fight their power and not allow them to destroy me. Names last... maybe forever.

Labels

This is where work came in. I was doing a piece of work and half way through, a particular phrase (not one I devised) was changed. Unfortunately, this phrase came up about a million times throughout the piece and even 'find and replace' wasn't great at finding them all. I could see the importance of the change of wording but it kind of niggled me a bit too. Obviously, I can't tell you what it was, or I'd have to kill you (and that might be quite a lot of killing) which would make me a murderer. Well actually, no... it would make me a person who has committed murder.

This is the idea behind labelling theory. There is a difference between a murderer and a person who has committed murder. The first labels the person, as though their action is part of who they are. The latter sees them as a person first, and thus (love that word) allows them to change their choices and desist from committing further murders.

Okay murder is quite strong. Let's scale it back to children. I do some work with Care for the Family. They very much promote the idea, in parenting, that you criticise the behaviour, not the child. So, 'that was a naughty thing to do', rather than 'you are so naughty!' Pointing out that the behaviour was wrong is more constructive than labelling the child as naughty. Because if I'm naughty, I should probably focus my energy on doing more naughty things.

I have a lot of thoughts swimming around my head on this. Going beyond the child example and thinking about crimes and big stuff, there is every reason to avoid labelling a person, and giving them the freedom to change their life choices... but what about the victims? If my child was killed by a drunk driver by a person who was driving whilst under the influence of alcohol, then calling them by a label might validate my pain more. It might make me feel like my child mattered more. I might not care too much about whether the person felt labelled or what their future life may become. After all, my child's life didn't matter that much to them! (No.... it's just an example! My kids are fine!)

Labelling isn't good or helpful but sometimes I want to label. Hmmm!

Language used to describe disability

Let's switch to disability-related language. It's quite fashionable, at the moment, to use person-first language. So we talk about a person living with dementia, rather than a dementia sufferer, etc.

Am I a disabled person or a person with a disability? Am I a wheelchair user or a person who uses a wheelchair?

Honestly, I don't really care. I am a disabled person. I am a wheelchair user. The labelling theory above, is about the ability to change... to not be defined by a label. Depending on how you interpret words like disabled, I don't think it applies in the same way. Short of a miracle, my situation is not likely to change. The label doesn't make me disabled. It's just a description.

My bigger issue is what people hear, see, think, etc when they encounter disability. Do they interpret disability as:

• weakness?
• fragility?
• incompetence?
• dependence?
• defeat?

Or do they see:

• resilience?
• problem-solving?
• creativity?
• determination?
• patience?
• tolerance?
• persistence?

I was thinking about the difference between those who have known me since before my injury and those who have only ever known the disabled me. These two groups of people treat me (on the whole) very differently. My family and old friends never treat me as some fragile person who needs to be protected and looked after. They don't assume that I am incapable of doing things. They don't talk to me as though I might break. They laugh at me, do banter, challenge me, expect the best of me and, when I'm having a bad day, they encourage me to do something positive rather than sympathising with my inevitable demise.

Sure, there are things I can't do. Steps are always going to be a serious challenge! Obstacles and narrow doorways, aisles and the like are often a stopping point but really?!! In this generation, that is something that needs changing, not accepting! Heat, hunger and tiredness... well they were my nemesis long before I injured my spine. 

Don't call me...

This is a highly personal list, and different for all, but don't use the following words to describe me:

• handicapped (unless you are referring to my lack of golfing prowess)
• wheelchair-bound
• crippled (though 'crip' might be okay for extremely close family/friends)
• severely disabled - get real! I struggle to stand, walk and pee, and my hands shake but there are worse things. I've told you a million times not to exaggerate!

Doggy!

I don't have to go far before I see a small child pointing at Liggy and shouting, "Doggy!" It's rather sweet and I'm generally pleased to see that most children are not afraid of dogs. Of course, sometimes I pass a child who is scared, and to be fair, when you look at the size of Liggy next to a toddler, is there any wonder? She must seem huge to them!

What amuses me though (and sometimes drives me mad) is what the parents (usually mum) say in reply to their little one. Here are some of the things I have heard in the last few weeks and months.

1. That's a blind dog

This one just makes me laugh. I know what they mean but really?!! My dog is not blind. Can you imagine a blind assistance dog? I think they mean a guide dog, but even then, surely they can tell that I'm not blind. Maybe not?

2. He's helping that lady

I thought I'd throw that in. It's almost the perfect statement, except for the assumption that she's a he. I wonder how we decide on the gender of a dog on first sight. Most people seem to think Liggy is a boy. Is it because she's black? Working?

They are right though, that Liggy is helping me. Sometimes they add in a line about not being allowed to pet/distract her because she's working. I am very grateful to parents who teach their children that.

3. Don't touch it. It might bite you.

I think it might be sensible to teach children that strange dogs might bite, but an assistance dog... in a supermarket? Highly unlikely. It's more likely that I'll bite the parent. Sometimes, the parent is reacting because they are scared of dogs, and I get that. The ones that irritate me are those who say it like a threat. Suddenly, my Liggy becomes the reason to behave better.

4. It's pulling the lady in her wheelchair

This is the one that always makes me want to shout back. I spent months training Liggy not to pull. Sure, she has aspirations of becoming a sled-pulling husky one day, but the one thing she is NOT allowed to do is pull. And if she is pulling, that is the best time ever to leave us alone! I will almost definitely be stressed and so will Liggy. Anyway, I do not need pulling or pushing! I am quite capable of moving myself around.

5. That's a very clever doggy, that is.

Well, that is the most accurate statement ever! I often wonder if they realise just how clever she is. They might have seen videos of assistance dogs emptying washing machines or taking cards out of the cash point. These videos always show the tasks that are highly visual. They don't show the half though. They don't show a dog, fast asleep on a carpeted floor and their owner dropping something so light (a pencil sharpener or a credit card) that you can't even hear it land. They don't show the dog waking immediately, retrieving and giving the dropped item back and they absolutely cannot show the amount of relief the owner feels at not having to bend down to pick it up.

Although this parent knows she's a very clever doggy, they might not have thought about the hours of  training it took to learn how to get the phone off it's cradle on a shelf that is just slightly too high, without knocking over the stash of LPs on the shelf below.

This parent might, if I don't look too busy, come and ask me what my dog does to help me. If I'm not busy, I really enjoy talking to people about Liggy, especially if they have children. Sometimes I deliberately drop something, to show them what she can do. They are almost always amazed at what she is capable of. Then I ask them which task they think she finds the hardest.

Nobody ever gets the right answer.

The task Liggy finds the hardest of all, is to walk past someone who is trying to fuss her and just ignore them. She's getting much better with practice but she is a very sociable girl and loves to 'say hello'. If we had time, she could be fussed by every person we meet and still not be bored of it all. Part of being a working dog... a clever dog, though, is learning to ignore distractions and stay focussed on me. That's hard and that's why I really appreciate all the people who leave her alone and make her job easier.

I can't fuss her at all?!!

Oh yes, fuss and hellos are the best reward in the world for Liggy... almost as good as food! So when she has finished a complete job:

• when we are leaving a supermarket
• when we have finished a meal in a restaurant and are paying the bill
• when she has been good through a long meeting (church/work)
• when she has completed a big task

Then, please give her loads of fuss. Be warned though, she will probably roll over and expect a tummy rub! And she'll lick you a lot. And her tail will wag violently and knock things over. But you will be reinforcing the message that she has succeeded in being a very clever doggy that helped that lady in the wheelchair and didn't pull and wouldn't even think about biting and actually just loves being a Canine Partner.

Assumptions

The last week or two, I've become quite conscious that we all make assumptions. Well, that's quite an assumption, isn't it? Am I assuming that you make assumptions? You might not. But I think we all do in one way or another.

I have a friend who often says, "Assume makes an ass out of u and me." (Look at what ass u me spells.) I haven't decided whether I agree with him on that one... not yet, anyway.

Here are just some of the assumptions I have heard or witnessed in the last couple of weeks (some were me, some weren't):

• Getting to church on my own is more difficult than going with my hubby.
• Criminals are always male.
• The car that has crashed up ahead is a black BMW.
• The driver of the Porsche convertible on the M1 is a young man.
• If a dog is attached to a wheelchair, it must be to pull the chair.
• Waiting outside a toilet means I can't open the door.

Actually only one of the above turned out to be true and, though I hate to admit it, even that one wouldn't be true on every occasion. (Sometimes the car that has crashed might be a black Audi).

Let's be honest, we all do it. We see someone and we make assumptions about them. Often, we are not even consciously aware of it. So what do people assume about wheelchair users? Here are my top ten assumptions that I would like to knock on the head!

1. Wheelchair users don't work (and if they do, it must be a low skilled job).
2. Wheelchair users find it more difficult to get around than people who walk.
3. Wheelchair users need to be pushed (or at least have someone who can push them when they get tired).
4. Wheelchair users can't walk.
5. Wheelchair users can't drive.
6. If you come out of the accessible toilet and a wheelchair user is waiting to go it, they are judging you.
7. Wheelchair users are old.
8. Wheelchair users don't get much exercise.
9. If wheelchair users did Pilates/Yoga, or took a certain vitamin/herbal supplement, or had a more positive attitude, or really put their mind to it, they would regain full mobility.
10. Using a wheelchair is the ultimate tragedy, a fate worse than death.

Don't get me wrong, I have bad days. I have days when I'm tired. I have days when I'm not well. I sometimes hurt myself doing something that shouldn't be at all dangerous. I sometimes feel grumpy and lose patience with someone.

But doesn't everybody? Those things happen because I'm a human being, not because I'm a wheelchair user.

I'm trying to be more conscious of when I'm making assumptions about other people. It might not stop me making assumptions but it might make me more aware of my own attitudes when I interact with others. Anyone want to join me?

Do you need any help?

I was at the vet's this morning, sitting on the back of the boot of my car, assembling my chair, ready to take Liggy in. A couple, walking past, asked me, "Do you need any help?"

I get that people are trying to be kind, when they ask this question, but I find it a really stressful moment. Some people are quite offended if help is refused, and many people seem to think that I should ask for and accept help more often... but I'm never sure what to say.

You might also be a kind person, wanting to help a random stranger that you know nothing about, so I thought I'd share some of my quandries on the subject:

At the car

I load and unload my chair practically every time I go anywhere. It takes a couple of minutes to pop the wheels on, put the back up and pop the seat cushion on. The trickiest bit is the wheels. Because I love my loopwheels, each wheel weighs about the same as the rest of my chair. Because Loopwheels are English and Ottobock (the make of my chair) is German, they aren't quite compatible, so I have to have a washer on each spindle. Losing the washer is very easy and if I lose it, I can't use my wheels.

So if I accept help with this task, I'm trying to imagine what will actually happen. Will the person know how to assemble my chair? Will they listen if I try to explain the importance of those washers? If they lose a washer, will they magically reappear later, when I am stuck, or will I be alone and helpless then?

Repacking the car, after an outing, is probably a time when a bit of help would be appreciated but again, I'm trying to imagine what would actually happen. Would they put all the pieces exactly where I know to put them, so that when I arrive at my next destination, and I'm on my own and they aren't there to be helpful, I will still be able to function? Will they wedge the wheels carefully down the side, so that they don't slide to the boot opening? Or when I open the boot, will they fall out on me? Will they even know how to dismantle my chair without damaging it? Or will I have to show them how to do it, which would be more tiring than just doing it myself?

So what help would be really helpful? I'm wracking my brain, but I genuinely can't think of anything in this situation that I would find more helpful than just being left to get on with it. I'm really sorry. Don't mean to be unhelpful but I actually can do this job on my own.

Restaurants

We were in a Toby Carvery last week, and a member of staff came over to the gravy and sauces area and offered to help me. That was quite handy, as I was sitting there, wondering whether the gravy had beta-carotene in it, whether I should have my food dry, just have a little bit, or risk having another allergic reaction. Help was just what I needed.

The lady started with an open question - "Can I help you?"

I didn't think it was that tricky. I needed help to know whether the gravy was okay. So I asked her whether the gravy had carrot juices in (not everyone knows what beta-carotene is). She looked utterly baffled and repeated her question. I thought I'd better go for a reword. So I explained that I'm allergic to carrot and often gravy is made with the water the carrots have been cooked in and asked her whether she could find out for me. She replied by asking whether she could carry my plate.

Fast forward about 5 mins and she did eventually go and bring me the gravy granules packet, which didn't mention carrots, carotenes or anything else I can't have. Then she asked whether she could put the gravy on my plate for me. Now I know I'm awkward, but I'm not the greatest fan of gravy anyway (too many allergic reactions) so I said I would rather do it myself. I thought she'd gone, but she was still there waiting to carry my plate. I have to admit, my patience was beginning to wither by now so my request for her to let me through might have been a little more curt than I intended.

Toilets

Gotta warn you, nothing baffles me more than this one. In general, the doors of accessible toilets are the perfect door! They are wide, light, don't close automatically, and have a bar that means I can close it behind me. So I do struggle to understand why so many people (men, more often than not) seem to want to help me go to the loo. I get near a toilet door, and people leap out of nowhere to offer to open the door. Now that wouldn't baffle me so much, except that often, the same people walk through those big heavy doors that swing shut by themselves, letting them shut in my face. These doors are too narrow, so I often fight to open both doors simultaneously, keep them open, and guide Liggy and propel myself through. If ever help was needed, narrow heavy doors are the perfect occasion for a bit of chivalry!

So do I need help going to the toilet? Yes, actually, I do. But I never get the help I really need, unless Neil is with me. Getting through the door, lowering the rails, getting myself onto the loo, etc... not a problem! Hovering over the toilet because the last person peed all over the seat - now that, I struggle with.

So when someone asks if they can help, what I desperately want to say is, "Oh, yes please! Could you just pop in before me, clean the toilet, mop/dry the floor (so Liggy doesn't have to sit/lie in a pool of water) and clean up any mess for me? I'm guessing though, that like the gravy-lady who didn't really want to know what help would be useful, but wanted to feel that she had done her good deed for the day, most of the men who stop me, don't have cleaning the toilet in mind.

Some rules for offering help

1. Think first. Is this a task that a person must do repeatedly, several times a day, every day? If so, they've probably worked out how to do it better themselves than I could do.

2. Ask/offer help but listen to the answer. Try not to have your own plan or assumption as to what help is needed. There is a lot of awareness of invisible disabilities these days. The invisible might be where help is needed most.

3. Only offer if you really want to help. This sounds obvious but I think many people offer help but it is to make them feel better or feel less pity, rather than to actually make me cope better.

4. Don't impose help. I didn't mention this earlier, but I have occasionally had people decide that I need help going up a hill, a kerb or through a door in my chair. Without asking, they burst into my world and manoeuvred me. The trouble is, my hands have been injured several times by people doing this. I got a really bad friction burn that bled for days because someone decided to help me up a kerb without checking where my hands were first. I've also had my knuckles crushed in doorways, too often to count.

Finally

Sometimes people offer to help, listen carefully to what help is needed and then help really helpfully. When that happens, I really really really appreciate it! We've just come back from Spring Harvest, where we attended events with 2000 people present. We were sitting with Liggy next to me but because the venues were dark and busy, sometimes people nearly trod on her... accidentally of course! There were two stewards there who really helped me by standing in front of her during entry and exit times, to protect her and me from being hurt. It wasn't a glorious task. Nobody saw them doing momentous things and commented on how wonderful they were. In fact, apart from Neil and me, nobody even realised what they were doing. But it was SOOOOOO helpful and I REALLY appreciated it.

I do like help. It just has to be helpful.

Oh, and by the way, I like helping too. So please let me help you sometimes.

Health warning!

Do you use a manual wheelchair?

Do you have nice big, strong arm muscles (like mine)? When I first started self-propelling in a wheelchair, I was the typical middle-aged woman! I had no arm muscles whatsoever and really struggled to go very far unless the ground was completely flat and smooth.

Fast forward to June 2016 and I decided, rather than be limited for the rest of my life, I would do something about it and get fit. So I lost a load of weight - almost 4 stone - and did the wheelchair equivalent of couch to 5K. It worked! I developed big, strong arm muscles, stamina in abundance and a back pat that could cause injury without ever intending it.

So all should be well really.

Yes?

No!

Last October, I was feeling very low and couldn't work out whether I was depressed or ill, so I went to the doctor. They sent me for blood tests - all of them!

I have a theory on path labs. There is no point in blood tests. They don't test them. They just make up results and feed the blood to either a room full of vampires or the Little Shop of Horrors.

The results came back and I got called in to discuss kidney function.

Medical Lesson 1

One of the ways they measure kidney function is by checking how much creatinine you have in your blood. They use this, along with your gender, age, weight, etc to calculate your kidney filtration rate. If creatinine levels are high, your kidney filtration rate must be low, because the kidneys obviously haven't filtered it properly. Or something like that.

So my creatinine levels were high, which meant that my kidneys might not be doing their job very efficiently... so just to check, I was sent to have more blood tests.

The results came back worse. So they put me on 2 months of vitamin D and told me to have more blood tests when they ran out. Not being one for half-measures, I Googled the situation and checked what else I could do to lower my creatinine levels. So I spent 2 months restricting my coffee intake, drinking plenty (and I mean plenty) of water, checking my blood pressure, trying to lose yet more weight...

AND...

It got worse!

I spoke to a nurse practitioner, who basically said I was looking at a possible diagnosis of chronic kidney disease (I had already worked that much out) and sent me for more blood tests, and a urine test too.

This morning

As I was having breakfast and preparing myself for the likelihood of impending doom, I suddenly thought, I've Googled how to lower creatinine levels but I haven't checked what could cause them to be high. So I did. And that was when I began to think they might be missing the obvious. When I say obvious, obvious to a doctor, who knows about these things. Less obvious to a pleb like me who doesn't.

Medical lesson 2

Creatinine is produced by muscles when we exercise. When I say exercise, I mean like proper, full-on, tough exercise. Weight lifting, body building, that kind of thing. Creatinine is a waste product and enters the blood stream. When they work out your kidney filtration rate, they don't assume that a disabled, middle-aged woman might have the exercise profile of Geoff Capes.

Back to this morning

I got to the doctors, ready to ask whether the extreme exercise that is self-propelling a wheelchair for miles each day, through carpet, uneven pot-holed pavements and up and down hills, etc. could be why my creatinine levels are high, only to be told... everything's fine. They've come right back down.

And that was when the penny dropped. All my blood tests were late afternoon/early evening, except the last one, which was first thing in the morning. Actually, for the first time ever, I was number one of the day. Dracula's first victim! This time, they tested me before I did my usual day's exertions.

I ran my theory by the doctor, who said that was highly likely to be the reason and told me to have another blood test in 6 months. Needless to say, I'll be there before they even open!

Just thought other wheelies might want to know. If they start suspecting kidney disease, just bear my story in mind. Whilst all's well that end's well, it has been pretty worrying contemplating a potential life without coffee for the last few months, not to mention any actual treatment that I might have needed!

Fountains Abbey

I'm going to intersperse this post with photos of the day, that are totally irrelevant to the text but show how lovely it was and hopefully show what accessibility is like (in case it helps someone else decide to go there). There, you've been warned...

At the beginning of the year, we joined the National Trust and decided to try to visit one venue each month. Of course, the likelihood is, we'll visit some more than once and find favourites that just work for us. Yesterday, we visited Fountains Abbey and Studley Royal Water Gardens. I vaguely remember going there once before, when the boys were little but it was so long ago and my focus would have been on them.

One of the things I'm enjoying about finding National Trust days out, is that their website contains really helpful accessibility information. Here is what it says about Fountains Abbey:

• Designated mobility parking at visitor centre and West Gate. West Gate car park is reserved for mobility parking only on bank holidays and busy days. Access vehicle to all admission points
• No wheelchair access from visitor centre to abbey; use West Gate car park or access vehicle from visitor centre
• Level access into abbey and mill. NB some access over lawn. Many steps with handrails to Fountains Hall. Ramp into St Mary's Church
• Adapted toilets at visitor centre, tea-room, near Fountains Hall and Studley Royal car park
• Partly accessible grounds, steep slopes, some cobbles. Map of accessible route. Main areas on level ground. Upper footpaths restricted preventing full circular tour. Six wheelchairs - booking essential
• Five mobility scooters available on a first come first served basis, booking essential. Call the estate office on 01765 608888.
• Sighted guides are available to pre-book. Please call 01765 608888

When I first looked, I almost dismissed this place as not accessible for me and my needs, but then I read it again and decided it was probably mostly accessible, provided I take my mountain trike.

The paths were actually better than I expected and if I'd had my normal chair, I could have probably still done most of the walk unaided. However the abbey area definitely needed my trike. Getting to it, we had to go over grass. Grass is often my nemesis! Not with my trike though! In some ways, getting into the ruins of the abbey and looking around, was easier than getting into many church buildings. They have done their best to make it possible, with nice duck-boardy type ramps over some of the rugged doorways. Sometimes we had to detach Liggy's lead arm, as most doorways are too narrow for us to go through together but otherwise, it was great!

I have mixed views about religious sites. I have mixed views about the commonly held belief that church is not about the building, but rather, the people. I get that. People are what makes a church... well, people and God... but having lived in the North of Finland, where temperatures get as low as -40C, buildings (for church or anything else) are pretty important. Also, when accessibility issues make church either accessible or not, the building makes the difference between whether you can do church or not. So although I know what it means, it's not strictly true.

About religious sites then - places like Fountains Abbey, though in ruins now, must have been immense, highly ornamented places of worship. Somewhat like the Jewish temple, somebody decided to devote a lot of time and resources to building something that they felt reflected God's glory. When I look around places like this, there is a definite sense of God's presence, and a wonder about the people - monks in this case - who loved God so much and were so devoted that they suffered in their daily life but also persecution. Actually, in many places, that is still the story of Christians.

On the other hand, there are things, right through history, that the church has got so wrong. All the fighting between denominations - killing and destroying buildings - why??? How did they think that was ever okay? And that makes me think, what is this generation of Christians doing, that they are convinced is okay, but really isn't? There must be things. It would be arrogant to assume that just because it's 2019, we've got everything right.

So, anyway, we had a fabulous day out! The only thing, access-wise, that I would say (in case anyone fancies a day there) is that the accessible toilets near West Gate, which are really nice, spacious toilets, with a half-way changing places attempt, are up a seriously steep hill, that for most independent wheelchair users, would be sufficiently challenging to make you either hold it or just wet yourself! Fortunately, Neil was on hand to help push me up said slope, but otherwise, I'd have struggled, especially after the walk, when my muscles were more like jelly!

Day-to-day issues

It has been a while since I wrote a post that highlighted the mish-mash of fairly dull issues that us wheelies (part-time or otherwise) face each day as we try to negotiate a largely non-disabled world. The last couple of days have given me some thoughts. I wish I'd taken photos but I didn't, so you'll have to use your imagination.

Some negatives

1. Dog poo! I know, I'm a dog owner and she poos... sometimes whilst out for a walk... but the key thing is, I PICK IT UP! Even though bending down to scoop poop is difficult and painful, I wouldn't dream of leaving it there for someone else to walk in. Recently, it feels like everywhere I go, there are piles of poo and if it's difficult walking without treading in it, it's ten times more difficult to avoid with four wheels and four paws to manage. A few weeks ago, I got a huge pile on my wheel and only noticed when I put my hand to my face to push my glasses up my nose and smelt it on my thumb. GROSS!

2. Broken glass. I understand how dog poo gets on a path but broken glass? How many people walk around with glass bottles in their hand or pocket. And why do they throw them on the floor so that they shatter everywhere? The dog poo is laziness but broken glass is downright spiteful! Yesterday, on the riverside path into town, there was loads of it. Again, it would be a pain if I was walking but tyres and paws can get seriously damaged by broken glass. I'll be honest, Liggy is more valuable than my tyres, so I realistically have to get her as safe as possible and just hope and pray that my tyres really are kevlar-lined as advertised.

3. Poor surfaces. I'm sure that when we first moved here, most of the footpaths had been fairly recently resurfaced and were lovely for wheeling on. Now, there are some that can best be described as a job creation scheme for the spinal injuries unit! Our normal walk into town, whichever of the two routes we take, shake me up and rattle my bones so much that they are increasing my pain levels, every time I go out. It annoys me for two reasons. Firstly, we are being continually encouraged to leave the car at home and walk short journeys, and I subscribe to that, even though I don't actually walk. But I am easily capable of wheeling myself into town and back. It's only about a mile each way. Secondly, the argument for not resurfacing is probably financial, but I'm sure that the cost of two discectomies would outweigh the cost of resurfacing the paths that are really bad.

Some positives

1. I've now been in my new workplace for just over 5 weeks. I was really nervous about leaving my old job because they had been fantastic with reasonable adjustments and I usually felt completely normal at work and rarely felt disabled there. That's a huge thing to risk losing. However, I have found my new workplace to be equally accessible, inclusive and helpful. I haven't had any major teething problems and I'm loving the job! It's in the news all the time about how difficult it is for disabled people to find work, and I know this to be true... but it is possible. There are good disability-friendly employers out there. That fills me with hope.

2. Liggy. Yes, she is a sentence in her own right. Going out with her is so much better than it was pre-Liggy. There have been a few occasions in the last few weeks, where we've gone to Starbucks for lunch. It's that time of year when it's cold out (hoodie weather) but warm in, and usually the first thing I want is my hoodie off. She just knows. As soon as we get to the table and I put her mat down, she knows the hoodie needs to come off. Then, one day last week, we went clothes shopping. Cotton Trader doesn't have accessible changing rooms and I didn't want to stress her out with being squished, so I left her with Neil, just outside and shut the curtain. She immediately realised it was a getting undressed moment, stuck her head under the curtain and got on with the job. If she could talk, I wonder what she was saying? "Mum, don't worry about me, I'm fine. It's my job to help you and I'm not scared of small spaces. Here give me a mouthful of that sleeve and we'll soon have you undressed."

3. The weather. Today has been pretty wet and miserable but I have to say, we have had weeks of wheelchair-conducive weather. It's been really easy for me to get out, walk Liggy and get on with stuff. It looks like we might now be in for some wet days but I have to remember that half empty reservoir that we hiked round in October. We really need to fill them up, so I won't moan about getting wet.

I remember when I first brought Liggy home, it was fun and she was helpful, but it was seriously hard work! I'm so glad we stuck at it though, because now I cannot imagine my world without her. She has worked so hard and learned so many tasks in a relatively short space of time. And one thing that I hadn't really noticed until people at work keep mentioning it... she is so attentive. She watches me all the time and is just waiting for me to tell her what to do, where to do, or just that she's a good girl!