Recruitment

Instead of imparting my words of wisdom to you (ahem..) this time I am asking you for advice!

I am looking at getting a new job - do I tell them I have a disability before the interview, during, after, not at all?! Does anyone have any experience of negative / positive experiences?

Help!

Shout it out.

Whilst I have recently had to step down in my work environment due to declining health, I do still manage to keep a part time role in retail with the support of my family and work friends. As a result of my disability I have occasions where I use a variety of walking aids - Some days sticks, some Crutches etc. Occasionally I get to use only under-clothes supports making me "look fine"


I had one customer ask me what I had done whilst on walking sticks one day. Rather than explain the whole Good day/Bad Day and as I wasn't able to tell him where to go I brushed it off as me being clumsy and left it at that.My boss heard and took me into the staff room for a word. I wondered if I should have not said anything - a lot of our role is working with children and parents can be very protective about the information they give them. And I was correct in thinking I was in trouble with her - but not for the reason I thought. She said to me - " Don't you ever lie about your disability again. Firstly if anyone does like it or has issues with it they can get the F*** out of my shop. Secondly Your disability is a part of you and your experiences make you, you. You have a natural empathy with the quieter kids, the kids who come in on their way to hospitals and doctors and can relate in a way none of us can. Be proud of who you are"


Whilst reminding me how lucky I am to be surrounded by individuals who support me so much (given some of the horror stories I have heard) it made me realise I do down play my disability, put a brave face on, Grin and bear it for the sake of others. Why?! My closest friends and family know what I go through so no point hiding from them. And anyone else - who cares!


So I wanted to pass this on to you. I have only classed myself as disabled in the last 2 years or so and am still adjusting to my "new life" so to those of you in the same boat remember how my boss finished my conversation - " Those who matter don't mind, those who mind don't matter"



My Family - Who don't mind and who matter so much. :-)

Wheelie Good Reasons..

There are a huge amount of reasons to use a wheelchair.

People who can *technically* walk - I.E they can actually move their legs, are wheelchair users too. If you see a tiny old lady in a wheelchair, you do not assume that she has lost the use of her legs. Just because some users are younger, this doesn't exclude them!

I occasionally use a wheelchair. I can walk. Some days I can walk very well (if only for short distances) Sometimes I have to use a wheelchair. It is far to pain full (and therefore unsafe) for me to walk even short distances.

Believe me, being an occasional wheelchair user is not something I do for fun, or because I "can't be bothered" walking. Whenever I am in my wheels it means having to constantly ask for assistance - getting into shops, people moving out of my way, cashiers leaning over to pass me things. (or worse - completely ignoring me to speak to my partner) The world is very badly equipped for wheelchair users. It is NOT EASIER. You have to pre-plan where to go, how you are going to get there. Book spaces in advance as many business only have one wheelchair space. No spur of the moment - "Ooh, this looks nice lets go here" you have to Google maps to see the terrain, so see what the floor is made of. And to finish up - you get constant people looking at you, because you "look" fine. I once got a middle aged woman, (I was going to say lady but that would be incorrect...) shout at me for being a fraud and "stealing" someone wheelchair as she saw me stretch my leg out. She said "That's disgusting, have you stolen someone's wheelchair? I've just seen you move so you can obviously walk. You should be ashamed of yourself!"

I was about to defend myself - Depressingly I was going to get out my Blue badge to "prove it to her" but my partner of 6 years who was with me was speaking before I even had a chance to think... She went on to explain that a) I struggle to walk etc and B) IT WAS NONE OF HER DAMN BUSINESS. She went on to explain that she had spent months encouraging me into a wheelchair (having previously been very reluctant for the exact situation that was happening now) she was not about to let some "narrow minded numpty" (I have to admit I was smiling buy this point..) make me feel ashamed for having a body that doesn't work for people whose brains dont work..

So please remember. Wheelchair users are in the chair for a variety of reasons. You wouldn't go and comment on a strangers clothes choice or say you thought they were ugly/pretty see our chairs in the same way - or rather, don't see them. We know about us, and we know why we are in them. You do not. It is not any concern of yours what we do. Just help us by opening doors, and assume we know our bodies best. 

CEA Cinema Card. :-)

I have had a CEA cinema card for over a year now. For those of you who dont yet know, a CEA card is a Cinema Exhibitors Assosiation Card (See ) and enables people with disabilities to have a free carer/companion with them in the cinema. (Just in case that link doesn't show up, simple google CEA Card)

It wasn't until I didn't renew my card on time this year that I realised how much I love this card!!!
Basically it works like this: The individual with the disability buys a full price tickets and a companion gets in free, works in Vue, Cineworld and Odeon - along with some local and private cinemas too. There is a full list on the CEA Website.

The best thing about this card, is that unlike some carer/companion card we have registered for the card is registered to ME. Meaning I can go with anyone who happens to be my companion for that day.

I also like the fact they charge me. This may sound odd but bear with me.. If I want to go to the cinema, why shouldn't I pay? Like everyone else. It would be positive discrimination otherwise. However, I don't have the choice of going alone as it would be too much for me. I like the fact that I can go as often as I like, but the assistance I NEED to enable me to go is free. It seems like a fair deal to me. I go now much more often than I used to so they are getting my business were previously they didn't. Win - Win.

There is a £5.00 admin charge once a year but with current cinema prices you only need to go once and it has more than paid for its self. Please note, for my wheelie friends this does not include any priority or booking of the (ridiculously limited) wheelie spaces and normal booking is recommended.

I highly recommend this card, I have gone so much more since and I do love an excuse for pop-corn so the saving on not paying for my carer is THE best excuse you could ask for... !


Does anyone else use the CEA card? Or does anyone else have information about other similar schemes?

Blue badge parking.

I have recently followed some "tweeters" who are campaigning for a tighter crack down in people abusing blue badge parking spots but in the midst of their campaign they have also upset some (one) badge holders - who in turn upset several badge holders. OOO The joys.

Their campaign is a "name and shame" with people submitting pictures of poor parking and tagging business in the pictures involved. They also have flyers that people can print and place on the offending cars reminding them that by parking in that space they have caused someone possible physical pain or even removing the chance to shop at all.

This caused a negative reaction with one blue badge holder - who had parked in a blue badge space without her permit having forgotten it. She said that she had felt "embarrassed and humiliated" from the whole episode. She said that she would have been able to fight it if she had been issued a ticket, and that she often sees people parking WITH permits that don't deserve it as she sees them "running to the car"

WELL you can imagine the backlash - myself a perfect example. I can seem fine, I can walk without sticks on good day. That doesn't mean that it doesn't feel like I'm walking in boiling water the entire time.

The biggest issue was the judgement from the badge holder. She looks after her mentally and physically disabled little sister. Yet despite what she must go through on a daily basis as her full time carer, she judges what others go through. I don't mind if people make mistakes with the PC terminology when their hearts are in the right places. If they use the wrong word, but still see the person first. This person - despite being a full time carer - assumed no one else had any issues.

Given that the government, DWP, ASOS and a disappointinly large preportion of the main population are against us WE NEED TO STICK TOGETHER!!!

My point, don't judge others, the biggest issue with any disability is the variance between each individual person. Don't stereotype, don't judge, just be. See the person first.

We need to cut through the CRAP. Just be NICE to each other!

Anyone have any POSITIVE stories to cheer us all up? :-)

A day in another's shoes.

Whilst I have friends and colleagues with disabilities, I've generally been the person with most disabilities or issues to have to manage on a daily basis. Until recently.

I've always appreciated my partner, she looks after me, cares for me, pre-plans everything and takes account of every aspect of my disability. I could cope without her. I've always known how physically hard she works looking after me, physically doing my washing, cooking, cleaning, carrying me, moving me and every household task I can name. I thank h daily for all that she does for me.

What I haven't taken account of was how hard it was emotionally. My father has recently been diagnosed with oesophagus cancer as has had a tracheotomy, shortly to be followed by laryxoptomy - completely removing his voice box and with it his ability to speak. Whilst physically taking care of him is something I can assist with, and his partner (soon to be wife!) can do - I had no idea how emotionally draining it would be to see someone you love in pain, and be able to do nothing to ease it, is horrible and I wouldn't wish it on anybody.

Watching him having to adjust to life with his now permanent disability is heart reaching. He is such a proud man - years of military training teaching him that only being perfect is allowed. Years of using his voice as his tool barking orders at the marine and now watching him feel less than whole as a result of its loss, is terrible.

He feels embarrassed by the dressing on his "stoma" (the hole in his throat) and embarrassed that it results in lots of coughing and spit (as you would imagine a hole in your throat would!) and I hate it. I hate that he feels he should HIDE what's keeping him alive. Hide his trophy of surviving everything cancer has thrown at him to date.

The emotional side is by far the hardest part of living with a new disability - for people on both sides of it. So take the time today - to say you to your friends and loved ones, that you apprichiate them not only for what they do for you - but for the pain and suffering they hide from you in the interests of protecting you.

Does anyone else have similar experiences and tips they could share?

Some hope yet..!

My disability is what they call an "invisible disability" As I get to know peoeple or meet people, I have to go through the conversation of what's "the matter with me" and "what's wrong with me" and explain to them the fluctuations behind my invisible disability. I don't mind this conversation at all - if I am making friends with people, they need to understand that there will be times that I will be physically IN a room, but miles away in my either too tired or too medicated to be involved with what's happening. There will be times where I can't go with them to do fun things - but that doesn't mean I don't want to be there, or not to invite me. What concerns me is the automatic language used - what's WRONG With me. What HAPPENED to POOR LITTLE ME.

But today - a glimmer of hope for the next generation. I manage to work part time in a child based retail establishment meaning I spend a lot of time talking with the younger parts of our society - and what's gems they come out with sometimes! But today - a young boy of 6years old, saw me on my walking stick and asked WHY I was on it? He asked me if I had different types of sticks for different activities, he asked me if sometimes I used a chair with wheels. He was asking me - me as a person - HOW this made a difference in my life. WHAT I did and HOW I went about my day to day activities. There was no negative connections in his head at all - all pure and simple curiosity. It was all going so well - until his (very well meaning) mother, came and apologised for his questions and told her son not to "ask the lady questions about what's wrong with her"

I respect the fact that his mother was doing what she thought was polite, and I aprichiate that a lot. But I don't need pity. Curiosity brought us The Big Bang Theory, Cars, Internets and Every I-type product to name a few. Pity gave us the Workhouse and Mental Asylyms.

I'd take questions any day!

Cuteness!!

Just trying to get the picture up. My best pain killing / fed up fixing things ever!!

Pain management

Well, today has started off with the best intentions but alas, those intentions have yet to be realised! There are still further applications and forms that need doing for other disability savings and discounts. Number one on my list, not done. Number two on my list - paint and "do" my nails. Not done either. However - watching Criminal Minds and sitting with the Cat and Dog? CHECK!

I have recently started a new pain management technique - it's a double prong attack using more natural methods, rather than bags of painkillers and strong medications with horrible side effects. I have a new aromatherapy oil, which is a great combination of peppermint, ginger and lavender and works surprisingly well. It rubs directly into the skin and causes the area to heat in a style very similar to deep heat but with a nicer smell, and a more relaxing effect in both the area and me.

I am also trying a "sketch" management system, which is basically drawing a picture - the more in-depth the better. It doesn't matter what of - the view from your window, the TV unit, your wall paper. The idea is that you copy something you can see, or can see in your minds eye. By copying something you can see it uses another part of your brain that helps to override the pain part of your brain that recognises pain. It helps to minimise the amount of pain your brain can register. It also works well with a mathematic equation and / or puzzle equation, which uses a similar part of the brain. It seems to be working well - not on its own, but combined with hot water bottles, paracetamols, pain gel etc etc. A step in the right direction of a more natural and holistic approach to my pain management. I recommend giving it a try!


I am trying to figure out how to put photos of the animals up too - they are the best pain killer I have! Once I figure that out I will put some pictures up.


Until then!
Stay well.
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