Disabled Parking and Youth & Disability - a mini rant!

So what is SO difficult for people about disabled parking?

I remember mother and baby (as it was then) parking coming in - I was pregnant when our Tesco first got it ten years ago.

Admittedly, there were teething problems, but within a year or two, it became accepted and normal and now, nobody would dream of encroaching on parent and baby spaces without a damn good reason.

Disabled parking though - a whole other ball game! - We've had it for donkey's years and yet it's still abused and made difficult for people who actually need it continually.

This last few weeks has been SO frustrating driving wise! - Three incidents in particular:

1) There was the instance of the able-bodied woman with no blue badge, who was returning to her car (illegally parked in the only blue badge square on Carrick-on-Shannon High Street) just as I was looking to park, so I did the standard - got her attention, showed my blue badge and indicated I needed to park in the square (yes I know we shouldn't have to but...)

Well! She gave me a look like she'd just scraped me off her shoe and instead of moving off, settled down to read a book!

Fortunately I was able to snap a photo on my 'phone (the final catalyst for her moving) and on the strength of showing that to the Gardai, she's being issued a fixed penalty anyway - the Garda I dealt with incidentally, was incensed (- very impressed by the level of understanding the local Gardai Siochana have over these things - second to none that I know of Globally on disability issues!)

2) I parked in the blue-badge space outside Heatons' store and when I came back, not only had a delivery driver taken the blue-badge space to sit and have his lunch, he'd parked at such an angle that his front end was over into my space and I couldn't have got out without hitting him. - Trouble is, he was quite a big bloke, so I didn't have the confidence to confront him, so instead I ended up doing the cowardly thing and saying to him: "Excuse me, I'm sorry to bother you at lunch, but I'm a learner driver and I wondered if you'd be able to move over a wee bit so I don't damage your vehicle practising my reversing (I'm still disgusted with myself over that one!)

3) Yesterday, coming up Ballinamore High Street, I was hoping to park in the blue badge space near the bank. As I approached, there was a lady half emerged from the side-street so I pulled up with my indicator still on and waited. - It transpired, she was having a chat with some woman who was standing in the road. - Now that I can understand to a point, she could conceivably have thought initially I was turning into the road, BUT a) Our car is covered with stickers the garage insisted on when they adapted our car and they all make it clear the car's a disability vehicle; b) After a few moments, surely it's clear that's not where someone's going.

My feeling was she'd decided I was going to use the blue-badge space illegally and wasn't going to put herself out by moving.

This was borne out when we did cut out round her (into traffic I might add - I have seldom felt less safe but we had to) and park in the space, even though I made a point of letting her see me put my badge out, she still looked C over when he got out (he's able-bod) and looked me up and down to and sneared - until I walked round the edge of the car. When she saw the stick, she at least had the grace to blush and scarper.

So why am I still so ticked off about these things?

Well for one, I'm having a grumpy day about my low mobility, but it doesn't help that again today, I had some able-bod idiot try to turn into the blue-badge square at the same time I was and AGAIN, his behaviour changed only AFTER he saw the stick.

It annoys the heck out of me - well, both things do!

If nothing else ever sinks in about disability issues in the day to day world, then let these three facts be it!

1) Blue-badge squares are there for a reason

- it's not there as an alternative to parking on double yellows (yes, that excuse has been offered)

- and that's not to be convenient for you, even for a "quick dip into..." wherever. Those of us who are lucky enough to be given a blue-badge have it because we NEED that support in able to be anything like normal and independent.

I know a lot of able-bods think that those of us who aren't "lazy" or "scammers" just have too much of a chip on our shoulders about the whole issue, or just like to be loud and objectionable about our rights, but to those I say - they just don't understand the importance of this issue to those of us living on the margins of "normal" society.

For us, it's not just inconvenience - for example, those spaces are wider because we do need a full door's width to get into and out of our vehicle for one thing - even those of us who use walking aids other than a chair. - For example, I like to consider myself fairly fit and sporty for a disabled chick and if I have a bad day, it can take me 17 minutes to get my bad leg into the car - I know, we've timed it! (out of interest and my stubbornness wanting to see if I could do it alone).

2) Our special parking is there because we need it so we don't have to mobilise so much to get somewhere.

- Okay, so this one is a wee bit obvious you'd think? Seemingly not!

Also, the context plays a role with this one. Every reasonably intelligent mind will appreciate that if you as a disabled person go to the supermarket and actually manage to negotiate all the obstacles there and actually manage to get your shopping, you're likely to be pretty tired when you finish - and if you then have to walk (even with an aid) or roll clean across the carpark as some able-bodied idiot without a badge or a reason for being there (obviously it's appropriate to park there if you have granny with you - she's in similar straights, but not solo able-bods popping in for a sandwich on lunch!) - it rankles!

It's not so obvious with social places like theatres and cinemas, but it's just as important.

A lot of us don't get a huge amount of invites to social stuff. - Most of us, if we're really lucky have a very small, tight group of friends who're used to going about with us and whose confidence has grown over time until they're more comfortable to be out and about with us.

If we DO happen to be invited out to a play or a movie lets say, then there's also a fair deal of trepidation on our part too - we don't want to "spoil" the night for our nearest and dearest - okay for most of us, they'd be understanding if something goes wrong, but still, we don't want our loved ones evening disrupted because things go wrong for us.

Okay so it's not an occasion when it's essential for us to be able to have easy access to something, we after all don't HAVE to tire ourselves out going to a play or film, but then it isn't for able-bods either is it? - Again, it's really unfair for us to have to juggle "is it going to be possible to find a badge space near enough to the theatre/cinema?" - especially not after so much time has passed since disabled parking became supposedly "the norm".

3) Not every disabled person is a wheelchair user and not every disabled person is over thirty!

- and those of us who aren't over thirty, or who don't use a chair should not be treated like some weird kind of 'second-class' disabled.

Okay, so human beings make snap judgements based on what they see, it's in our make-up.

Granted, but that's only for the first 9.something so lets call it 10 seconds. - What's the excuse for the rest of the time?

We are fortunate enough to live in a society where MOST prejudices are now getting to be, if not already, a thing of the past. So what's the problem with young disabled people?

We happen to be two things: young and disabled.

We didn't want it, but it either has always been this way or it happened.

****WE ARE NO LESS VALID PEOPLE BECAUSE WE'RE BOTH YOUNG AND DISABLED****

We do not need pity or sympathy - we know life's not meant to be like this, we're not stupid! Neither do we need "a bit of a push" to "try a little harder" or any other twee line you care to think of.

We're just doing like any other person and making the best possible life we can and just like anyone else, we have a right to do that in our own way, making the use of the supports that are right for us (if we chose to) and most importantly, we, like anyone else, have the right to do that without obstruction on interference.

So the next time you're pulling up somewhere remember:

* If you don't have a blue-badge you don't park in blue-badge spaces

* If you're near to a blue-badge space then you need to be aware. - Are you blocking someone getting in/out of disabled parking? Are you parked too close to their vehicle to let them get in/out?

Just use your common - please! So many just don't

Day 3 and the project gets its own website

Just a quick halloo today. Lots has been happening - not least, Dogs for the Disabled Ireland are officially on board.

Also, the project now has it's own website at: http://mrsmouse.webs.com

What do you think? It's still something of a work in progress, but it's not bad for a few hours work.

The project may need a proper name or title. Any suggestions?

Hopefully I'll find a way to get some pics up on there (and here) very soon.

The project has legs! and other real world interactions

Well, half a leg anyhow.

I have my first charity on board!

I'd like to do this in aid half and half of Northwest Hospice, Sligo and Irish Dogs for the Disabled.

I'm still waiting to hear back from Dogs for the Disabled (their Lady was busy today, but hopefully we'll get to speak tomorrow) but I hope they'll like the idea.

In the meantime, I spoke to day with John at Northwest Hospice (John and Anne are the fundraising team there, so I guess there'll be plenty of posts about them in the next six months) and he likes the idea. - He's even going to let me use the Hospice's Logo on related stuff.

The search for an exhibition/auction space is proving a wee bit difficult, but we won't be defeated!

So far, I've drawn a blank, but it's only Day 2 and already, one gallery owner has said that although their space is technically booked, he's going to ask his committee if there's anything they can do to support. - Bless him!

In other news, we're also going to be helping out at a fundraiser this weekend at CG Power Systems in Cavan in aid of the relief efforts in Japan.

I love these occasions. - It's brilliant, as a disabled performer, to get to work in person with children and families in particular.

- I always like real life encounters anyhow - for example I once got stopped in a Pizzahut with the family and asked by a little girl why I have the stick.

The parents were mortified, but I have the attitude that kids will ask what they need to know when they need to know it. Now obviously there's different levels of information you give to different age groups - this little girl for example, I believe the response was "well, you know how Mammy and Daddy say never to play on stairs in case you get hurt? Well, I ended up going down some stairs (note the not using "falling" - obviously wasn't going to tell the kid a bad man threw me down the stairs, but the parents got it I think) and now my back and legs don't work so well and the stick helps me walk.

Another time, just before last Christmas, right after I broke my scafoid and busted the ligaments in my ankle, so wasn't allowed to walk at all, we'd borrowed a chair to do the Tesco run. (See I really love my C so I'd never expose him to a pre-Christmas Tesco alone for anything!)

Well, have you ever tried to keep a self-drive wheelchair with one hand in plaster? - It's hilarious! So-and-so painful, but hilarious!

We'd developed this technique where I did the bits near the middle aisle while C went up and down, which is how I came to be stuck doing loops round the bottom of the fruit and veg gondola on my own. Anyhow, I'm kind of suddenly aware of this small boy stood (thankfully) just outside of running-over range clutching a bunch of bananas.

So I came to a stop and he came up to me and dropped the bananas in my lap saying "I got these for you - I don't think you can get to them. Can I get you anything else?" - I was absolutely gobsmacked - such a nice kid! All I could think of to say to him was "thank you - how did you know that's what I needed" - he just shrugged and hopped off down the aisle on one leg.

Fortunately, we were able to find the kid's mother before we left the store and let her know what a great guy she was raising, so that was okay.

and how exactly does this relate to performing I hear you ask?

Okay, well, how many disabled clowns have you come across? - Come to that, how many disabled people do you see day to day in a working context? (Even including volunteering/therapeutic work context) - it's not many is it?

So it's a really good thing, as a disabled person with permission to be doing therapeutic work, not only accomplishing something by working (and for those of you who aren't crip, believe me, it's such a sanity saver some days!) but also to experience those real life moments - especially with the child with a confidence problem, that's just an amazing level of job satisfaction! - and you know what they say - always do work you love and you'll never work a day in your life. - So yeah, big tick in that box this weekend - the double hit of a gig for a good cause (which we both really enjoy) AND we'll be working hard doing what we love!

I haven't forgotten about those photos incidentally - it's just that cable I found doesn't fit my 'phone so, once I can stand a bit longer again, I'll just have to turf out the "random cables" drawer and try to find it. - Or sweet-talk C into taking some more on his 'phone.

Low mobility, BST, sparks of Ideas, and a new challenge...

So all this wonderful weather is amazingly well timed!

Having been on a period of low mobility for the last few days, the sunlight has made such a difference in keeping a relatively high mood and in sparking creativity at this end. It's even helped to get beyond the normal oddness that follows the clocks changing.

C spent a lot of time in the garden over Friday and Saturday, planting a couple of new shrubs and veggies for the coming growing season, so I've begun piecing together a mosaic of pieces of mirror I was given through freecycle.com (Leitrim) to make a solution for getting more light into the garden. (Pics to follow as soon as I can find the right cable)

It's coming on really well, but we're going to need some more polyfiller to get it done. - Hopefully C will go out for me in the morning.

Meanwhile, a dream last night left a flash of inspiration.

Here in Eire it's the Year of Craft. I've been mulling about ideas for a while on how to commemorate this and it's finally hit me: I'm going to see if I can put on an exhibition of knitted sculptures of local buildings and then see if I can't get them sold/auctioned in aid of some of my favourite charities.

So, I've made a start. Well, actually, I've made a list so that I can babystep into it gently over the next few days (FLYlady would be proud!).

* I've taken some preliminary photos and picked a few local landmarks to begin with.

* I've made a list of places to contact to see about hosting

* I've chosen the charities I want to support and will be contacting them tomorrow to see if it's okay to run with it.

* I've made lots of progress with my last project to finish before I can begin.

So hopefully, whether or not the legs choose to work this week, I should have some exciting news in a day or two!

Dogs for the Disabled Ireland

On January 30th, I got into a conversation thread on Facebook with some of the guys on the Irish Dogs for the Disabled. The upshot of which is, I have permission to start blogging about my experiences with them so far and going forwards.

So who are Irish Dogs for the Disabled? - and how on Earth can you tell if a dog's Irish? Tee hee!

No, Irish Dogs for the Disabled are an Irish Charity who provide assistance dogs for disabled people.

Based in County Cork, the charity is three years old and already changing lives.

At: http://www.dogsfordisabled.ie/

you can learn all about Irish Dogs for the Disabled, the work they do, see cute pictures of the dogs and pups and support by making a donation if you wish or by buying calendars etc.

So what makes someone like me want to apply for an assistant dog?

Well, for one thing, I am generally an advocate for assistant animals generally. I have experience from my family of the RNIB's puppy socialising programme in the UK and I know many people who work with assistant animals, ranging from hearing and seeing-eye dogs, to a cat who's trained to warn my friend when she's about to have an epileptic fit and needs her medicine. So I have seen at first hand just how much difference these companions can make for their partners.

In my case, I have applied to be partnered with a dog, as I believe a partnership will give me three things that are vital to a decent quality of life.

These are:

* Confidence

* Independence

* Dignity

Currently I walk with a stick. Don't worry, that's not a sympathy plea, it's just what the situation is and in all honestly, I'm at peace with that to a certain extent (particularly since I was told that by Christmas of 2006 I would be in a wheelchair permanently).

If I'm at home or indoors in places I know, I don't like to use my stick. It's something I've discussed with my OT and Public Health nurse and they support me in this. - For me, it allows me to have both some time working on my strength and balance every day (which is an essential thing if I want to maintain my mobility as good as it is now) and it allows me some "normal" time.

Up until the last year, I used to manage my mobility between "one stick days" and "two stick days" depending on how bad my mobility was.

However, last year I started having sensation and power issues in my left arm.

From working with my then counsellor, I learnt that it is not uncommon after traumatic periods, for the body to go into a form of "survival mode" where the body sort of ignores or switches off to an injury in the short to medium term to enable us to deal with the business of surviving, so even though it was 2007 when I was hurt, the true extent of the damage didn't show until the spring of last year when I'd got through my counselling and my body was relaxing out of that survival mode.

The problem with my arm, means that I can no longer necessarily rely on two sticks on really bad days. So the choices were, sacrifice mobility altogether on those days (never a good idea - you end up playing catch-up with yourself forever!) or find another solution.

So, if I successfully get matched with an assistant dog, I will be able to turn one stick days into 'walking with dog' days because the dog will be able to provide me with a stable base of steady forward motion that I can use to keep myself balanced and mobile and two stick days, which are currently no mobility days, would become dog and stick days, which means that I will be more able to get around independently EVERY DAY no matter how good or bad it is legs-wise.

Having a doggy companion will also allow me to ride public transport when I need to without having to try to find someone to accompany me. - Another lease on independence.

So that's the chief way that being paired with an assistant dog would change things for me, but there are other benefits too.

The biggest single benefit, from my perspective, is the element of boosted confidence.

Sad to say, no matter how good people are about disability (and I'm thinking of all people here from Jo Public all the way through to medics and everywhere in between) the reality often is that if you happen to be both young (say under 30) and disabled, the greater amount of the time you're going to hit one of two negative attitudes - either that soft, head on one side gesture with masses of sympathy for "you poor dear" which is sweetly meant, but actually can really undermine and undervalue you and make you feel like you're of no worth at all, or, on the other end of the spectrum, you get the attitude (ridiculously enough often from fitness professionals and physios etc) that if you happen to be young and disabled, then somehow you're just not trying hard enough.

Now call me paranoid if you want to, but I reckon a whole heap of that's tied up in the stick - and a lot of other stick users agree. Especially when you're young, it's incongruous - it doesn't fit with people's expectation and I think when people are wrong footed, that's when a lot of the accidental ignorance situations happen - just mainly because people are uncomfortable.

So believe me, if I'm successfully paired with an assistant dog, one of the things that I'm going to revel in is being able to go out alone with him/her WITHOUT THE STICK and enjoy being able to engage in a world where the snap judgements made about me are less likely to be that I'm incapable, or weak, or just too odd to comprehend.

That, I'm aware is going to seem an odd thing to say for anyone reading this who's an able-bod, but if you think about it, it's not so unusual. - One of the beatiful, complicated parts of the human animal is that we make value judgements, all of us, it's natural and all of us want to present to the world our 'Best Face' and it damages our mental health when we can't do that.

So CONFIDENCE is something that I believe working alongside an assistance dog will bring as well as the DIGNITY of having a better stab at being accepted and identified by my personality rather than my disability first.

_______________________________________________________

The application process so far has been fairly easy.

A simple, downloaded form from their website in easy language, asking direct questions about our family and support network, our ability to keep up with the application process and to attend for training, and most importantly, our ability to care and provide for the animal we hope will be put into our care.

We went down to Cork last summer to meet with Jenny who's in charge of training the dogs and to go through the application and just talk about the benefits of a partnership, as well as making sure we all know about the downsides too and can cope with them. (Fortunately I'm well used to clearing up fecal mess from a variety of babies, people, cats, dogs, etc.)

Now, it's a waiting game.

Pups live their first year with "socialisers" who are volunteers who, as well as taking care of the puppy's needs, introduce the basic good manners s/he will need later on and expose the puppy to life in all its glorious facets so that the puppy gets used to a broad range of sights, sounds, and smells, ready for when they go out into the world.

After about a year, pups enter their training. One of the cleverest things about the assistance dogs scheme, I think, is that the skills that pups learn - and therefore the partnerships they're placed in, is dictated by the individual hound's personality and aptitudes.

Our hope is that maybe one of the current or next batch of dogs after this one might be a match for me.

Meanwhile, we're doing what we can to support this wonderful charity.

Disability Reforms

So, having read this:

http://www.dailymail.co.uk/news/article-1348851/I-want-to-work--I-just-need-bit-help-I-independent-One-legged-man-told-disabled-specially-adapted-car.html

I dropped in on www.davidcameron.com

As a still passport holding, if without a vote "UK Citizen", offered him my 9-point ideas for reforming the current disability scheme so that he can pinch them and make them his own. The message is below. I wonder what he'll make of it?

___________________________________________

Dear Mr Prime Minister

Having lived under both the UK's DLA system (UK citizen with passport) and now under the Irish disability scheme, when reading today about Robert Oxley, I was not at all suprised.

I have long since come to the conclusion that both schemes need a bit of tweaking, but that with a bit of inter-governmental support, both systems could come out on top.

The Irish scheme is much easier to live on day-to-day basis as the amount received is enough to live on properly (i.e. at or just above breadline depending on circumstances), but there is little room to allow the candidate to work. (Actually, there is adequate provision, but the accompanying benefits - Household allowance and Rent Allowance, make it impossible to invoke that part of the scheme).

The UK system at least allows a disabled person to work, but the application and appeal system is flawed. - Personally, while on the UK scheme, my experience was that I had to fight for over five years for any DLA at all and when I did finally get a hearing, I was advised by the CAB agent who helped me to finally do the forms in such a way as I was no longer interpreted as "Not disabled enough" (My average mobility is about 2-3 mobile with aids days in a week) told me that I was being disallowed from mobility, even though the chairlady acknowledged I needed it, because it was her personal policy to disallow some portion of every appeal she heard to teach the applicant a lesson for appealing. - Even the attending security guard at the centre agreed that she was "known for that".

I also know of another disturbing case, but that I would like an opportunity to email to you away from the public forum as I do not know if that person would want to be public.

How I suggest that a reformed DLA system should be:

* Disability benefit to be ONE benefit, not care and mobility portions as now (more on this later)
* One form, possibly based on the current Irish application for the applicant and their supporting doctor to fill out. This form should also, as epr the current Irish provision give one box for a doctor to tick for permission for the candidate to do therapeutic/permitted work if the Doctor thinks it would benefit them.
* A sensible rate of payment. By which, I mean, that the new disability payment gives enough to properly live on, so that the applicant doesn't have to go out and claim IS or JSA, Food tokens etc on top (this will also bring down some of the admin costs of these other benefits and could provide some of the funding for this new scheme) I would suggest that for an individual this be around the £100 - £150mark. There should be a monetary figure that may be earned in permitted/theraputic work each week. - I would suggest this figure be around the £100 mark.
* Being on the new disability scheme should automatically qualify the candidate for HB, CTB, Winter Fuel Allowance and Disabled Persons' Tax Credits - there should be no deductions from any related benefit unless the candidate earns more than there weekly allowance for permitted work. Each of these benefits should have an easy form, to get the person's name, address, NINO and DOB and then only require a photocopy of the letter of entitlement to disability to be enclosed with it (Again, less paperwork, less costs, more funding can be diverted into the running of this new scheme)
* Being on the scheme should entitle the individual to x (perhaps) 10 hours a week with a Personal Assistant. They should be able to buy more hours if they need it (This will provide jobs at least 10hrs a week to trained Carers - perhaps disillusioned former NHS staff would be good in one-on-one roles where they can really make a difference on a personal level and money from extra hours would pay a portion of the PAs' wages and could contribute to the running of the new scheme).
* Motability should be available to every person in receipt of the new disability benefit who passes a medical evaluation of their capability.
* VRT and VAT relief/refund should be available for every recipient on their transport and petrol.
* Every candidate should receive a bus and rail pass.
* The current living abroad rules should be slightly altered so that a citizen living in another EU state ought to be allowed to retain their benefit for two years instead of only one. - That way, the UK would no longer be inadvertently preventing its disabled citizens from their right to live in the member state of their choice. (This may seem counter intuitive on the surface if we are to make the financial administration of the new system as efficient as possible, but if you see point '4' below, You will see where it is that I think a portion of the necessary revenue could come.)

If all of that were in place, more of the UK's disabled citizens would be:
1) Living better
2) Able to live securely - under the current system, if you live and are independent to the best of your ability you are likely to be penalised
3) Due to '1' & '2' more able to be productive citizens, generating income for the country (through both working - thereby generating income for the country and paying taxes and leisure/getting out and about etc )
4) Legitimately getting help. - Part of the reason why so many defraud the current system, from what I have seen, is because it's so spread out and fragmented. Bringing the new system in would centralise and clearly delineate rights and responsibilities from grass-roots all the way up to the cabinet and ultimately, to your office Mr Prime Minister. - This point, in and of itself ought to save the country a huge amount in benefits that are currently being paid out to frauds who've diluted the system to a nonsense that is failing the very people who need it most.


I do hope this will be of use to you Mr Prime Minister. I am sure that you will also find that if you were to embark upon a reform of the Disability Benefits System, that many of us regular citizens within the Disabled Community, both at home and abroad, would be only too happy to help at any point in the process.

Etsy Ireland

Many thanks to the team at Etsy Ireland for the warm welcome. I'm thrilled to be working with you guys.

Anybody who hasn't already, should go and check out:

http://etsyireland.blogspot.com/

To see all the wonderful things that members are making. - Who knows, you might get some ideas yourself!

Right, back to it. Today is feeling like a crafty day and I owe my friend a pair of pumpkin-topped baby slippers for her two-year old nephew.