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Sunday, 19 May 2019

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?

Saturday, 20 April 2019

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.

Wednesday, 10 April 2019

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!

Sunday, 24 March 2019

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.

Photo showing the wide compressed gravel path from West Gate to the Abbey


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!

Photo showing wide gravel path with slight descent that approaches the water gardens


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.

Photo showing narrow wooden footbridge, with no railings, over the lake


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.

Photo showing cobbled path in front of the Temple of Piety


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.

Photo showing one of many entry points to the abbey, over grass


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!

Photo showing the inside of the cellar area, with dust floor

Wednesday, 6 March 2019

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!