Skip to main content

Wednesday, 31 July 2019

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.

Saturday, 20 July 2019

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


A blackboard with "Words have power" written in large letters.


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


Photo of a pair of chopsticks with three pebbles

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!

Saturday, 13 July 2019

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.


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.