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.