BADD: Less hostility, please!

Could everyone please stop glaring at the people who support me?

No, seriously, knock it off. The people who support me, which encompasses friends, family, and paid employees, are absolutely invaluable to me. They increase my quality of life more than I could ever describe.

Yet all too often, when we are out in public, they are subjected to tutting, glaring, and occasionally verbal abuse. They're sick of it. So I have to put myself in the way of it. I'm sick of having to do that.

The Battle Of The Blue Badge

We're out and about. We've parked, legally and legitimately, in an accessible parking spot for blue badge holders. My blue badge is correctly displayed.

Half an hour later, we're not going home yet, but one of us needs something we've left in the car - a jacket, an umbrella, a bottle of sun cream. Or maybe we've purchased something that's a bit too bulky to carry around all day that we want to lock in the car while we continue shopping.

Fatigue is a big part of my illness. An extra few hundred metres to the car and back can make a significant difference to me. Especially if to a person using the stairs it's only fifty metres. It should be possible for me to ask my non-disabled companion to nip back to the car while I use the opportunity to sit quietly for a few minutes and gather my spoons. That would be the sensible thing, right?

Instead, I end up going with them so that the visibility of my wheelchair provides a force field to protect them from the hostility of the self-appointed parking police who believe they can assess disability and determine legitimate blue badge use at a single glance.

No companion of mine has ever reported any trouble from an actual parking attendant.

Drive-By Training Sessions

Since I got the power-assisted wheels of awesomeness, I've really developed a taste for independent mobility. I know, these wacky concepts some people are into. The rule, therefore, is: unless I am losing consciousness, or I am oblivious to an imminent danger, or I have specifically requested that you do so, it is never okay to take hold of me or my wheelchair. It's pretty much the same rule that applies to physically grasping anyone to take control of their movement.

I can go up hills. I go more slowly than I do on the flat, but the wheels do the work. Sometimes passers-by ask me if I'd like any help, and - as long as they believe me when I say No Thank You - that's okay.

What's not okay is when they stare pointedly at my companion while saying "someone should be helping her," or worse, "you should be ashamed, letting her struggle like that."

On one occasion it got so bad that the friend who was with me asked for permission to just put their hands on the handles of my chair lest they be fried alive by the laser-beam eyeballs of a particularly indignant stranger. I refused - I will not reinforce the false prejudices of others by pretending to be more helpless than I am - and to my friend's credit, they respected my refusal.

It did impact the mood of the afternoon, though. If we'd been walking at that pace, no one would have batted an eyelid and we'd have been free to enjoy ourselves without intervention.

Dominion Of The Golden Throne

Yeah, you knew this was going to crop up. The accessible loo.

My companion waits outside while I'm doing what one does. The locks and indicators on the doors of accessible loos are notoriously unpredictable, so sometimes I'll ask them to let any other would-be widdlers wanting to go in know that it's occupied.

And this is the one where disabled people themselves are the prime offenders. From the other side of the door I hear them refusing to listen to my companion's explanation, barging past, rattling the handle, and launching into a rant about the facilities being for disabled people only - a statement which also includes a lot of assumptions about the "disability status" of my companion. On a less dramatic and more frequent level, there's the people who position themselves to block my exit from (and my companion's potential entry to) the cubicle. As a rule, they have the good grace to blush and get out of the way when they deduce from my wheelchair that oh, I am disabled, and maybe this person was just waiting for me, and oh gosh, what if I'd opened the door because I needed them to come help me, oops... but that doesn't help. It just makes me thankful that my wheelchair, as well as being a mobility aid, is a symbol. It makes me worry that one day when I'm walking with my stick, which has less symbolic impact, the situation won't be defused as efficiently. It makes me scared for the various people I know with leg or back impairments who can stand and walk quite well unaided but need a fixed handle to safely manage to sit down.

Situations like these make me upset that yet another everyday non-event has been turned into a battleground, and guilty that I have exposed my friend or employee to abuse, and powerless because I feel fairly certain it'll happen again.


Again and again, the barrier that is hardest to knock down is the attitudes of other people, and our own. Even when I have privileges like the blue badge, equipment like the wheels, accessible facilities like the loos, accessible environments with step-free ramped routes, and appropriate human support - the issue of disablist attitudes remains, and impacts negatively on me and on the people around me.

This is the barrier that Blogging Against Disablism seeks to overcome.



If you haven't already, please visit Diary Of A Goldfish to read more posts.

Inaccessible Accessibility

I am, and have been for some years, a holder of a Blue Badge. The Blue Badge is a wonderful thing for access. My badge is up for renewal in a couple of months, and Warwickshire County Council have very helpfully (credit where it's due) sent me a renewal form and some guidelines.

They need proof of:

• My name, in other words my marriage certificate.


• My address, in other words my council tax bill.


• and my eligibility, in other words my letter confirming my award of Disability Living Allowance including the High Rate Mobility component.

So far no problem.

BUT!

They don't want the responsibility of handling original documents. They want me to send certified copies.

Okay, that's fairly sensible too. I prefer to keep my original documents in my own posession and I appreciate the effort to reduce the risk of losing them.

According to most of the UK, a certified copy is a photocopy of a document that has been verified as being true by a person who holds a certain position of responsibility. A doctor, a policeman, an MP, a civil servant, you get the idea. The Jobcentre made a certified copy of my marriage certificate when I went in to change my name. Or, that proud institution the Post Office will make certified copies of up to three documents for the fairly reasonable sum of £7.15 as part of their passport and identity services.

These certified copies are good enough for most institutions and can be used for opening bank accounts or getting mortgages, but apparently they're not good enough for Warwickshire County Council's Blue Badge scheme. Warwickshire County Council insist that the certified copies must be made by someone who not only fits the usual criteria, but also knows me personally and is not a relative.

(Amusingly, however, I can self-certify my own photograph for the badge as a "true likeness" without it having to be corroborated by anyone.)

I couldn't quite believe it and phoned them to check. The conversation went a little bit like this:
(Me): I'm a blue badge holder. I don't drive. I'm written up as "socially isolated" on my care plan. I don't know that many non-relatives. Can I bring in my original documents to your offices and wait while you copy them?
Only if you know someone here who can confirm that you are who you say you are.
Oh. No, I don't. Well, can I send normal certified copies from the Post Office?
Do they know you personally at the Post Office?
No, but they do proper legally acceptable Certified Copies...
They have to actually know you and be able to confirm that you are who you say you are. We've had to introduce these measures to combat fraud.
But you seem to have made it difficult for precisely the people who the scheme is aimed at! The reason I don't know people is because it's difficult for me to get out and about!
I can't discuss policy. There must be someone. Your best bet is someone who owns a local business. Do they know you at the local shop?
No, they don't know me at the local shop, because I'm a blue badge holder and as such I don't walk to the shop.
Or your bank?
I bank online. I shop online. I work online. I do most things online, because it's really difficult for me to get out and about and that is why I have a blue badge!
If you're working, how about your boss?
I am self-employed. I don't have a boss and I doubt you'd let me self-certify.
Anyone you know through work who runs their business?
Clients? Some of them would be eligible, but most of them have never met me, because I work online, what with the whole being eligible for a blue badge because it's difficult for me to get around issue. They only know me on email and phone calls.
But they know that you're you - they can do it!
May I ask you a question? Imagine you have a business. Imagine you try to project a professional image to your clients of being capable and self-sufficient. Would you feel comfortable placing yourself in a position of need? Giving one of them your disability benefits confirmation letter to thoroughly examine?
er... I see the problem but it looks like that's what you're going to have to do.

Warwickshire County Council, ladies and gentlemen. Recommending that I go whimpering to my clients. Advising me that I am obliged to do this in order to obtain an access tool. Refusing to accept the perfectly accessible and inexpensive identity-checking service offered by the Post Office. Creating additional barriers. Well done, boys and girls.

There is a happy ending. Another disabled person is helping me out. That doesn't make Warwickshire County Council's attitude acceptable.

Now, to take a deep breath and try to rewrite this post in a less ranty form, in the hope that explaining their error to Warwickshire County Council might lead them to change things in future.

Nobody knows what's going on...

Being one who cannot walk or drive or use public transport, I sometimes make use of the local Community Taxi scheme. This is administered on behalf of the local council by a local football club whose premises are also used for all sorts of "community ventures". A journey by community taxi isn't as cheap as a bus, is only available during daytime hours, and you have to book a couple of days in advance, BUT it's door-to-door, it's guaranteed accessible and it's about half the price of a normal taxi, so swings and roundabouts. Generally, for unplanned things I need to use a normal taxi, but for planned things like say a dental appointment I use the community taxi. So far so good.

In February I got a letter from the football club telling me that the Service Level Agreement with the local council would expire at the end of March and that the council had decided it would not be renewed. The letter told me that the council would instead be issuing "taxi tokens" for people who could not make use of a bus pass.

Today is March 16th so there are 15 days left until the change from community taxi to taxi tokens. I still hadn't heard anything from the council, but we know that some of our post is *cough* going missing *cough* so I thought I'd phone the council to make sure I hadn't missed the letter and ask things like "what are taxi tokens?" and "when can I have some?"

The chap on the phone said they don't know what's happening yet. He said they were hoping a decision would be made within the next two weeks and that then people using the community taxi scheme would be written to and informed of what was going to happen. I don't know how long it will then take to physically distribute these "tokens" or where/how they might be redeemable.

So basically, having tossed the old system, which wasn't perfect but helped a lot of people, they hope they'll have decided what new system they want to use before the old system expires.

All of this makes me even happier to be able to report that it shouldn't bother me too much, because I now have a PA to take me places. She starts this week. A big round of applause for P at the Rowan Organisation who has very competently and patiently guided me through the entire process of getting Direct Payments and becoming an employer and hiring a PA, from advertising to insurance to contracts and everything else that goes with it. It's an awful lot to try and understand, especially with my brainfog on, but P has always been able to answer my questions and explain things clearly, thoroughly, and (this is important) without making me feel like a moron.

Regrettably the local council's SLA with the Rowan is also expiring at the end of March, so I'm losing the marvellously competent, efficient and trustworthy P, and in much the same way as no one can tell me about these taxi tokens, I still don't know who I'm getting transferred to instead to steer me through my first months as an employer.

I fear April may be Interesting.

Still working

It's been more than a week now since I started work. It's going well. I am getting very sore and tired, true, but the work gets easier to do as I get more used to it. I've learned the job pretty well and am hardly getting brainflustered at all any more. Co-workers continue to be lovely, and I'm now 'officially' an employee rather than the casual see-how-it-goes thing we started out with.

Things at home are settling out nicely as well. The Roomba (or 'Bloop' as he is coming to be affectionately known) is doing well - not only does he clean the carpets, but I think he also makes us a bit more inclined to keep the place tidy, as roombas aren't really compatible with floors full of trailing wires, shoelaces, knitting, paperwork and whatnot. The shopping delivery from Sainsburys the other day was great, everything well in-date and only a couple of substitutions which I was perfectly happy with (eg "we didn't have the pack of two pain au chocolat that you ordered. So we're substituting a pack of four," OH NOES). Steve has been making more of an effort to do stuff around the house, especially the washing up, which has been an enormous help. Of course when he goes back to work, I'm going to have to pick up a bit more of that, but I'm not panicked about it. The only bit that worries me is the kicking him out of bed in the mornings, which is not a task for the easily discouraged. Steve is reading this, but I honestly think he would have to be among the first to admit that first thing in the morning he Does Not Want To Know about the world outside the duvet.

Knitting is seriously slowed at the moment. I did manage to go to knitting group on Tuesday for about an hour after work, but found myself regretting it a bit. I think it might be better to do what Steve suggested - finish work at 5.30, come home, have a nap, and then go out again to knitting at maybe 7.30 if I'm up to it. I turned down this suggestion last week on the basis that it seemed a bit silly for Steve to have to drive into town and back three times in an evening (1 pick up from work, 2 drop off at knitting, 3 pick up from knitting) but it might be the only realistic way to do it.

As you will have noticed, we're still talking about Steve taking me to and from work. On Friday (the 16th) we went to the council offices and got my ID and Blue Badge and whatnot photocopied, and the plan then was that the council would refer me to Community Transport, and then Community Transport would send me a form to apply to them, and once they had that form back, we could see about transport. However, I haven't had the form yet.

Today, I got through to Access to Work on the phone. Someone answered, took my name and number and a brief run-down of what I wanted, and said he'd arrange for an advisor to call me back.

A few minutes later, Yay, points for speedy actualisation of promises, T, the advisor called me back to tell me that he was going to go through a form with me and it would take 15 or 20 minutes. OK, so far so good, it was mostly stuff like name, address, NINo, do you claim this, do you claim that, what help do you want... great.

An interesting question was "do you claim Incapacity Benefit?" to which my answer, which should have been yes or no, was "not since I've started the job. However, when I first tried to call you, between getting offered the job and starting, then yes, I did get Incapacity Benefit. But your phones were down." Surprisingly enough there wasn't a box for that. T couldn't backdate my AtW claim, so he had to put "no" because at the time of our conversation, I was no longer on benefit. But he did ask what number I had been trying, and apparently "that number" was down for about six weeks. Which implies that they have a second number, which the DEA didn't give me, with which I might have got hold of them sooner. Do we think I should make a complaint about this DEA yet?

Fifteen minutes later, the questions were all answered, so now what? Well, T will post the form to me today. If it isn't with me by Monday, I should call them back. When I get the form, I must check it, sign it, date it, and send it back to them. Once they have the signed form back, then another advisor, a notch up from T, will look at the form and phone me to discuss things in more detail.

In the mean time, the DWP and the council and everyone else official are happy for me to be attempting to get by on £20 a week because of the cost of transport to and from work soaking up most of my earnings - it really is just exceptional luck for me that I have someone who can give me financial support and transport for the short-term immediate future. Dear Peter Hain, THIS is why disabled people who are technically capable of doing some jobs get stuck on Incapacity Benefit...

If I'm ever short of a few bob

I'll know exactly what I can do.

Blue Badges selling for up to £1600

Jesus. I wouldn't leave an iPod (£260) or a TomTom (£350) in a car, particularly not anywhere it would be visible to anyone having a nosey, but if I use a disabled parking space I am supposed to leave my disabled parking badge (£1,600 - more than the value of my stepdad's entire car!) right on top of the dashboard, specifically in full and easy view.

In fact, technically we could get a ticket if it isn't in full view, for instance if it blows off the dashboard when we shut the door. It is my responsibility to make sure the badge is displayed in the correct manner.

There is of course the issue that plenty of people go ahead and park in the disabled spaces with no badge whatsoever. This year two of the spaces outside my flat are marked as "disabled". I've yet to go past it and see two cars displaying blue badges. Generally there's at least one of the following:
- A red crapmobile with printout pages in the windows advertising it For Sale.
- A green car advertising and belonging to the Indian restaurant/takeaway on the corner.
- A transit van advertising and belonging to Chriscott, an electrical shop two doors away.
- A 4x4 advertising and belonging to Home PC Fix, a computer shop a few doors down (but this is not the crappy shop that sold us the Problem Machine).

Strangely, none of these display blue badges. And they're all properly parked, not just dropping someone off or whatever. But I digress.

All I can think of is that I could keep the badge on me at all times and see if I get away with leaving a note in the windscreen stating my name, mobile number, which building I've gone into, and that if a parking warden wishes to check my badge they can please feel free to call me, or come in and find me, and examine my badge to their heart's content.