It's Fibromyalgia awareness day.
As my lovely hubby said: "I think you're aware of it every day!"
I'm also aware of it every night....
But I ain't gonna give in to it!
That means I don't normally say what hurts or how things are on social media - unless it's really bad and I need prayer.
I also don't say because some folk will make judgments that just aren't true.
I wrote a while back about the lady who said I should just retire because people like me shouldn't be galavanting around the country - well that's what I'm referring to. I might have had a bad night, I may be in pain, but I have never given in to it. I will opt out of some social things to make sure I'm up to fulfilling work commitments - but that is my choice, not the choice of folk who don't 'get' how I work.
Using my power wheelchair can increase hugely what I can do. Staying seated in my power chair for meetings saves energy too (no wriggling around to stay comfortable, arms on it to help my stability in the seat and the ability to recline slightly at the push of a button - bliss!) And strangely, getting up an hour sooner than others saves energy, as I can get ready slowly. Rushing in a mad frenzy wastes energy.
I am so very fortunate! With various adjustments I can do my work and my ministry. Others can't. Please don't judge them - Fibro and other similar conditions are spectrum diseases. They affect people in different ways.
I'm also very fortunate in having a Steve (my hubby). He is my rock and he keeps me sane! He goes out of his way to make sure I can do what I need to do with the least amount of effort. His understanding of these diseases I have is amazing, and his patience unending.
Above that - in all of this - God is my refuge. The place where I go for comfort in the night, for stamina in the day - the place where I take things before I write on facebook (or just think about writing on FB). He is my fortress in troubled times.
Today I might tweet or facebook about what it's like to have the conditions I have - just to open eyes. Not to moan!
I'll start on this blog: Last night I didn't sleep much - The eye pain I get was so severe it was nauseating. The pain killers didn't even touch it. This morning I just feel sick and my right eye is throbbing. (This over and about the normal daily pain I have) So today my laptop's brightness setting will be on low, the document backgrounds on cream and the font on giant print! And the pain killers piggy backed every three hours.
Wednesday, 15 April 2015
I have come across folk with disabilities who have scared me witless.
This is not because of their disability, but their attitude to those around them.
When I’m doing disability consultancy I fear being summoned by them. It’s terrifying waiting for them to access what I have put in place because I know I will get a tirade if I have got something wrong - even a small thing.
So if I, a disabled person, fear these folk - just think what it’s like for someone who knows nothing about disability.
The whole disability world can be very confusing, the terminology varies and changes depending on who you talk to.
Reactions from those who have a range of disabilities can be vastly different too, depending on their circumstances. And to be honest, some disabled people can be their own worst enemy, growling at people who try to be helpful but get it wrong, and getting very angry when things are not right in every minute detail. These people say they shouldn't have to inform people of their needs all the time, it should be accessible, all the time, end of discussion!
I naughtily call these folk "disability terrorists". You don't really have to do much to incur the wrath of them, and not all of them are disabled.
Opinions on and reactions to disability terminology/access vary between those born with a disability and those who become disabled.
Preferred terminology will vary depending on how people view their disability.
Reactions vary hugely on certain common phrases as to whether they are viewed as 'Ableist' or not.
For example, I've always been told it's better to put the person first and the disability second. So you would say "A person with a disability". But many prefer it the other way around. They feel that being described as a person with a disability defines them by their medical issue, but instead say they are disabled by society being largely inaccessible, so this makes them a "disabled person”. In other words, it is society that makes them disabled, not their medical condition. (For those ‘in the know’ on these things, we’re talking Medical Model vs Social Model)
Some folk don't like to be called a wheelchair user, some prefer 'differently abled’. Others call themselves ‘wheelies’.
All this political correctness can get very silly! I’ve been ‘barked’ at by other wheelchair users for using the wrong words to describe myself and severely told off by an able bodied person for calling myself a cripple (in jest, on twitter with #CrippleLooseInLondon).
What I call myself is completely up to me. If I’d called another person a cripple…. well that’s a different story.
For myself, I don’t really mind the order of words.
I prefer ‘person with a disability’ but if I’m tweeting - it uses too many characters, so will revert to ‘disabled person’. I call myself a ‘wheelie’ but have no problem with being called a wheelchair user.
I do dislike being referred to as ‘Wheelchair bound’ because, just like many others I can walk a bit! (And I’m not tied into my chair…)
But if you do call me that - I won’t bite your head of…. or run over your toes.
There are phrases that shouldn’t be used, but we have to bear in mind that people of a certain age will use them. Gentle reminding is good - but we are changing the habits of a life time. Even my mum uses words like handicapped, crippled, retarded, mongol etc! I agree that younger people should know better, but when Americans still use the words handicapped and retarded it’s difficult to educate in this.
My favourite response to the question “What would you like to be called?” is “Kay”
By being grumpy and adversarial in the way we approach correcting these words, we are not helping ourselves, or the people we are trying to teach.
We all have our pet irritations, our crusades and our preferences when it comes to the subject of disability. But some of us take that to a whole new level!
I live an itinerant life, having to access many different places to do the job I do. I’ve come to the conclusion that to help people help me, I need to give notice of what I need. This helps the people providing the service I want to access, and gives me peace of mind that what I need will be there.
Having said that, if you are disabled, and your permanent place of work is not accessible, then you have a right for reasonable adjustments to be made.
Being disabled doesn't make me the centre of the universe - I have to share this world with others.
I could insist on permanent ramps up to all shops so I don’t have to wait for them to be put out. But in places where they are put out permanently, into a public thoroughfare, my friends who are blind have been seriously injured by falling over or off them because there is no warning of the ramps being there and nothing to show where the edge is.
I have to share this world with people who have other disabilities too.
There are somethings in this world I won’t be able to do - that’s just life. But public places that will be used regularly such as churches and libraries etc should be accessible to at least a reasonable level, and information about it’s accessibility made available on line.
I will still fight for my right to access the world around me, to be treated as a fellow human being and to be allowed to live my life doing the job I love without discrimination. But I promise I will try to do it with good grace.
Tuesday, 14 April 2015
Having said yesterday about the ‘arm strokers’, there are some folk who are the exact opposite.
Some people won’t come near me, or my other disabled friends. They will give a wide berth, look away quickly and avoid any eye contact.
Some will stare from a distance
This wide berth syndrome is most often due to not knowing what to say, feeling awkward, or being fearful of saying the wrong thing. Some of my disabled friends have not been helpful in this by growling at people when they got it slightly wrong, even though they said what they did with the best of intentions. To those friends I say “At least they tried - get over it!”
I sometimes get round this fear by having a finger puppet on the joy stick of my chair. It makes children feel more comfortable and creates a talking point for adults who haven’t spoken to a wheelchair user before.
I never mind people asking about my chair - if they are sensible comments (more on that later), or even about why I use it. These questions are great for educating people (For example: A large percentage of people who use a wheelchair can actually walk, they just find it difficult/painful).
I can understand those who feel awkward around me. There are very few disabled people in our churches - way, way less than the national average. (90% of the disabled community have never heard the gospel). If you’ve never been around us, and only heard the negative propaganda, then it’s only natural you would be nervous.
To you I say - treat me like you would anyone else you meet.
Like other people I have loves and hates, can compare coffee stories, can talk about knitting and even geeky things like gadgets, tablets and computers. What would you like to talk about?
If you’re worried about saying the wrong thing, all you have to do is ask. But be warned….. what is Ok for one disabled person may be wrong for another. For example: I’m happy for someone to offer help even if I don’t need that help. I’ll often say “no, but thank you for offering" because I’m thankful they asked and know that one day I might need that help. I know some disabled people that get all offended by the offer of help and I don’t get it. I do believe some disabled people need to lighten up a bit and give space for mistakes that can be gently and graciously corrected. So if you don’t know what to say - just try. I’d rather have a clumsy conversation than be ignored. And I apologise for my fellow disabled friends who may have been rude to you because they have a different point of view to me!
If you’ve read the previous two posts, you may think that this particular post doesn’t quite agree with them.
Let me explain: The latter two posts are dealing with attitudes, actions and comments that are beyond normal interaction - stuff you wouldn’t dream of saying or doing to an able bodied person. As I said in the last post, this is a good rule of thumb - would you say or do this if I was standing?
But please understand, wheelchair users can get irritated by repeated comments - just like anyone else.
Over recent weeks in my new chair I’ve had people say the same things over and over again, and each person thinks they are the very first, and each finds their comment hilarious.
Here is a snapshot of those comments:
“Have you passed your test in that?”
“Can I have a ride on the back?”
“Can’t he (my hubby) grab on the back with a scooter and hitch a ride?”
“Can I sit on your lap and have a ride?” (One person has actually tried!)
“You’re lucky having wheels”(!)
“Are you allowed to drink and drive?” (Said whilst I was drinking a take away coffee - sometimes the only way I can manage to drink a whole coffee)
I wrote a tirade on Facebook about it, but took it down later, as my friends were worried they had upset me too. One friend couldn’t quite believe it was that bad until some one said about sitting on my lap right in front of her!
But there’s a difference about my friends saying stuff - they are my friends and I like them taking the Mickey out of me! They have earned the right to say stuff such as - “you need a reversing beep” just because I do! One friend took it upon himself to be my reversing beep for a while when I was with him - that was fun. They can call me a bad women driver - they’ve earned the right to do that by walking with me through the pain. I am secure in their love for me.
Feel free to ask me about my chair - I’ll tell you that it’s name is Pippin, it goes up to 5mph, it has powered tilt and recline, but it doesn’t rise up. It also has awesome suspension. For children who ask, I *may* even give a demonstration!
Tomorrow: The disability terrorists! (Or: “Some people with disabilities really don’t help the situation".)
Monday, 13 April 2015
I tend to view my body as my own.
I don't think I'm unusual in that.
Only those with permission or those who I count as friends and trust are allowed to touch, even if it’s only a hand on my shoulder.
This is for many reasons…..
- History: Don’t ask, just take my word for it that my history has made me wary of close contact with people I don’t know.
- Pain levels: I have a complicated pain disorder and muscle conditions that mean a touch in the wrong place can cause painful spasms (I’m still getting over the pain of an inappropriate and unwanted approach/action last week.)
- Personal Space: Like anyone else, I like my personal space left alone. I’m also an introvert.
So why do people feel the need to stroke my arm when they talk to me? To squeeze my hand ‘sympathetically’ and hang on to it (Often along with the words “It’s such a shame you’re in that wheelchair”)
I was a bit naughty with my title to this, implying that only Christians do the ‘repeated arm stroke’, but actually - it’s not just the preserve of Christians. It just happens more with Christians.
Here’s a good rule of thumb - before you lay hands on a wheelchair user (In any way) stop and think “Would I do this if the person wasn’t in a wheelchair?” Then think “is it appropriate when I don’t really know this person?” Ask yourself this question twice, the second time adding “would I do it if they weren’t a Christian?”. This should give enough time for common sense to kick in.
I have found that being a wheelchair user gives the impression that I’ve given permission for anyone to touch, stroke, squeeze or have a face pushed close to mine (As though this is the only way I could possibly understand them).
My simple response to this is: NO…..just no!
A friend of mine has a child who happens to be a wheelchair user. She has found that in the Christian festival environment people will stroke her child whilst cooing over them (This is not a young child), or even take them away in their wheelchair, without her permission, to have a dance in the worship time. This is not helpful on many levels. It’s not good safeguarding practice, it’s rude, and it’s not helpful when she’s trying to teach stranger awareness. Would these adults do the same with an able bodied child? I think not.
Here’s some sensible advice. If you’re in a situation where you would normally use touch, maybe when praying for someone, comforting or listening to them. Just ask first.
But there is another side to the coin. Being completely ignored - and that’s the subject of the next post…..
Note To My Friends: If you have done any of these things, and I haven't said anything, then it's ok - don't feel guilty! I'm honoured to have you as my friends. Because we're friends I would have no problem saying when not to touch or hug.
Sunday, 12 April 2015
“People In Wheelchairs are Weird”
Yes, somebody actually said this. Horrendous isn’t it?
Let me add some context to the comment.
A young friend of mine uses a wheelchair. He’s a bright kid with a wicked sense of humour and was attending one of the children’s programmes last week. In his team was a little girl who asked a few questions about him and then announced, in surprised fashion, that he was actually quite ‘normal’. One of the leaders in the team gently asked why she was surprised by this. Her answer was worrying: “My mum says people in wheelchairs are weird. But he isn’t”.
Now, I’ll be honest - I don’t know the context in which mum has said this, and how the understanding of a young child has changed what was actually said. But what stands out is - a 7 year old child really believed that wheelchair users are weird.
The dictionary meaning of weird is: “Suggesting something supernatural; unearthly. Very strange; bizarre.”
Let’s face it though, there are weird people around! It’s not the sole preserve of the physically disabled. Weird people who become Christians are often not cured of their weirdness.
So what’s wrong with being weird? As Christians, there is a supernatural element to our faith, so on that level - we’re all weird!
I suspect that what was meant in this comment wasn’t the dictionary definition.
This comment was passed on to me not long after I had a strange, but amusing conversation myself. An elderly gentleman came over to talk to me and said "You know you need to exercise every day? People get into these wheelchairs, give up and get really fat....."
I took this comment for what it was - an elderly gentleman with a particular view, and I responded graciously, pointing out that I was an ex nurse and understood the need for ‘appropriate’ physio.
These two things are just a couple of examples of many things I had said to me, or heard reported by others, but they give a good overview of what is known as “Ableist Thinking”.
But, what I was more concerned about was the comments either unsaid, or made obvious through actions and conversations. I will cover some of those things in another post.
But here’s one example, I asked a guest to open a door for me so I could get to the Big Top, and was greeted with “The Big Top doors don’t open for another 10 minutes, so no I can’t open the door for you.” Now, maybe he was cross at being turned away himself because it was too early and took that out on me - It might have been anyone who got the brunt of that and the wheelchair was nothing to do with it. But I persisted (In the absence of anyone else to open the door!) by saying “It’s ok, I’m a volunteer and have to be in the Big Top before the doors open.” even on seeing my badge, and the radio I carried he wouldn’t take my word for it, preferring to believe that people in wheelchairs don’t serve or minister. I gave up and waited for another person to help me get through the doors.
Tomorrows post: Christians who stroke arms.
Saturday, 11 April 2015
I love the way Spring Harvest have embedded disability awareness into the centre of their being. They do what they can to be inclusive within the constraints all organisations have, whether Christian or secular. It is standard practice for health and safety to ‘trump’ inclusion when it comes to large events, and I believe Spring Harvest balance all these things really well. They do the best they can with the resources they have at their disposal.
Of course, Spring Harvest is more than an ‘organisation’. It’s a group of people who work all year round to make this amazing event happen, and an army of volunteers who work tirelessly not just at the event but sometimes for months before the event too.
I love working with this bunch of wonderful people - they’re like family! They accept me, include me, support me, and have me on the team year round so I can do the same for others who have a disability or additional need.
Their belief in me is humbling - I hope I can live up to it.
I want to say a huge thank you to the many guests who opened doors for me, stopped and chatted, were not afraid to ask questions about access, my job, or even my new snazzy wheelchair.
I also want to say a huge thank you to those who wrestled with getting large print and Braille song words out for the celebrations, the teams of BSL interpreters who were willing to support so many in the celebrations, streams and seminars, and the Stewards who often went above and beyond the call of duty to make sure guests who needed some extra support got it. Many, many volunteers had a part in making sure everything came together and worked.
And I especially want to thank those who so graciously accepted advice when we needed to point out when things were not working for specific guests and then speedily sorted things out.
I loved the gracious responses of those guests who, due to the health and safety restrictions, had to accept things done in a way that wouldn't be their preference. They 'got' the fact that even secular organisations have to abide by these restrictions - it's not just a Christian event 'thing'. So thankyou for your gracious and Godly acceptance - I hope you were blessed greatly during your time with us
Over the last couple of weeks, it has been interesting to see the breadth of comments, attitudes and actions about all forms of disability within the Christian community.
I wrote a lot of Facebook comments and tweets about some of them, but deleted many of them - the negative way in which I had written them was not helpful. Thankyou to those who gave their support and showed their love on those status updates and responded to those who were condemning Christians for their lack of thought. As you can see from my comments above - there were more people to thank than growl at!
I will be writing some posts on the comments and actions I either had or observed. These posts will NOT be a reflection on Spring Harvest - they have loved and supported me through all the naff comments and actions. What I want to do is shine a light on these thoughts and misconceptions in the area of disability and additional needs. I want to help those nervous of saying the wrong thing, and educate those who just don't get it. We would like everyone to be as caring and sensitive as I know Spring Harvest is.
But for now - this post is for thanking God, the Spring Harvest head office team, and the huge army of volunteers who worked with us.
Friday, 20 March 2015
Now for a weird verse to start a blog post:
Amos 5: 21 - 24 (NLT)
“I hate all your show and pretense - the hypocrisy of your religious festivals and solemn assemblies.
I will not accept your burnt offerings and grain offerings. I won’t even notice all your choice peace offerings.
Away with your noisy hymns of praise!
I will not listen to the music of your harps.
Instead, I want to see a mighty flood of justice, an endless river of righteous living.
It doesn’t make comfortable reading does it? And it certainly would not make it onto the fridge, held in place with a ‘footprints’ fridge magnet!!
But it’s a passage that keeps coming back to haunt me.
I remember it being preached on when I was in my 20’s - quite a brave move on the part of our then minister.
It haunted me then too, but not as much as it does now.
It’s got nothing to do with any of the festivals/conferences I go to or work with, and nothing to do with my enjoyment of worship. I love worship and hearing a huge congregation singing God's praises - it can be spine tingling! It's not got anything to do with the worship leaders I work with either - they are wonderful people.
What I am about to comment on is a trend - not any specific individuals.
What bothers me is that ‘Sung Worship’ is becoming the ‘be all and end all’ of worship when actually - justice and care is also a large and vital part of our worship. As is living a righteous life.
It bothers me that more and more folk are going to conferences on worship, and less and less are going to conferences about reaching out to our communities.
It bothers me that our young people are being conditioned into thinking worship only means singing and having a good boogie to Christian music.
It also bothers me that more people want to be worship leaders than Sunday school leaders, preachers and coffee servers.
I have found that the aspiration of most Christian young people today is to be a worship leader.
And yet, conversely, having stood at the back of a youth worship event, where the leaders felt the young people wanted the worship loud, with mainly darkness and sweeping lights - not many of the young people seemed engaged with this worship experience, that was supposedly designed around them.
It bothers me that many, MANY reams of writing and blogs are given over to how we do our worship better and with more glitz, and stuff written on how to feed hungry children goes mostly unread.
It bothers me that often, the need for some church based worship leaders to do things their way, in the name of “enhancing the worship experience” (Yes, I've heard that said) often means the vulnerable in our churches are excluded and unable to worship, because “the mood” is more important than making sure ALL can worship - inclusively. It also bothers me that this lack of inclusive worship is often blamed on the Holy Spirit’s ‘leading’…..
I must admit that I often see big worship events on TV, watch the trendy light displays, the darkened room with people jumping up and down…… and I feel sick - both physically and emotionally.
This is because I believe with all the concentration on worship, we are selling our children and teenagers short.
We are not teaching them that living a righteous life is worship
We are not teaching them that Justice is worship
We are not teaching them to care.
We are not leading by example in other types of practical worship in the form of Justice. And by that I don’t mean the trendy things that we jump on the band wagon with - the ones that will be forgotten in a couple of months, but rather, a long term passion for justice in our world and righteousness in our own lives.
Last night I visited a youth group who asked for a consultancy appointment. The adults and some of the young people who run this group feel God is leading them to reach out to other young people with additional needs. They already have a few, and as a team they want to reach out to the vulnerable in their community. They are a small and unknown group. They don’t sing - but God LOVES their worship.