You Better Shape Up

In my last post I said I didn't want to moan about disability experiences all the time, but then today I was sent an opportunity by Shape. They are looking for stories (good and bad) about experiences with Access to Work. Being slightly less curmugeonly as usual on this bright and sunny day, I took the opportunity to backslide. Also, lazily, in the heat, and because I have neglected Fangworld a bit lately, I have decided to reproduce it here as a post. I better hope A to W don't know who I am after the honeyed ending of my last entry. But then again they will have a new opportunity to impress me once the novelty of the new powertrike has worn off (and I realise that I'll never get within 3 feet of my computer with the trike attachment stuck on the front of my wheelchair).

I will post something happy and fluffy next week. Maybe.

What stage are you at in your Access to Work journey?
I've twice sent off for the paperwork, but haven't returned the forms, the first time because I had such an awful phone call with them, the second time because they told me at the enquiry stage that I had to be first assessed by my local wheelchair service, and complications with the wheelchair service waiting list have meant I've gone beyond the deadline Access to Work set on their form. This is an ongoing situation, and because they won't take a general enquiry about the local difficulties I'm having, I've just given up hope they'll process any application for a wheelchair to work until my local wheelchair service re-assesses me. I have a sneaking suspicision this may be wrong, but they're so difficult to talk to I've pretty much given up until everything locally is sorted, which in my case may take another 12 months or so.

How would you describe your relationship with Access to Work?
Iffy. I feel like I'm about to be judged, and have had enough of that everywhere else already. I feel very suspicious of staff disability awareness.
Besides, I'm still not clear on what they'll do for me, because they don't seem to welcome general enquiries before I've applied. This makes me uneasy about the service will really provide for me, when it finally happens. I'm pretty sure they're suspicious, rather than supportive, of self-employed disabled people. And artists.

Tell us - in as much or as little detail as you like - what your experience of Access to Work has been and what kind of end result you've achieved.
I rang them on the advice of a mentor when doing my first residency as a disabled artist. The man on the phone was vile. I asked if he would answer some questions I had prior to my applying, so I could see if it was worth me doing so. I said I didn't really know what I could apply for. He refused. He insisted that unless I started an application he would not be able to talk to me. I started giving him the information he asked for, but after my name and address he asked me what my disability was. I didn't think he meant diagnosis, so I told him I was a wheelchair user because I had a mobility impairment. He sounded annoyed and said I had to tell him my diagnosis. I said it was a genetic disorder and gave him the (unusual) name, whereupon he said "Yes, but what does that mean?" I felt forced at this point to describe symptoms, in detail that I do not normally feel comfortable doing, like how it affected my bone structure. He asked me what help "I thought" (i.e. as if I was stupid) I needed, and I said I'd like to be able to hire a personal assistant. He told me flat out I couldn't have one. After a pause, he explained this was because Access To Work didn't call them personal assistants, they called them support workers.
I got so cross with this kind of patronising crap that I asked to speak to his boss, who agreed with me when I said I didn't like his attitude, but didn't send me out a complaint form like she told me she would. She was ok to talk to, but again, wouldn't answer any general enquiries.

Now, I know they cannot promise any help or equipment at that early stage of someone approaching them, but I felt like the reluctance to discuss the ways in which help might be offered, and how their procedures worked, bordered on the assumption that as a disabled person, I would be too stupid to know the difference between information on general procedure or a promise to provide something! Which frankly, was insulting.

When I found out they sent you a form to fill in with the details you'd given over the phone, I wasn't surprised to see the name of my diagnosis spelt wrong, and badly summarised. After the detailed medical information the man had said he needed, on the form I was simply classed as someone who was "deformed". At this point my confidence was in my boots. It was the first 3 months of my self-employment and this had felt like a bad medical appointment. I actually had a cry over my encounter with them on this occasion, and told my mentor I'd rather walk over hot coals than go back and ask them for help. This was in 2002.

Years later, my career had been going well, but I was struggling to cope physically. I rang them up, and I'll be damned if it wasn't the same vile man again. So I just put the phone down and dialled again until a different person answered the phone. Again, an enquiry about the process proved awkward - and there was definite suspicion when I said I was self-employed. This made me angry. Self-employment is a perfectly reasonable thing for a disabled person to do - isn't it? Yet again I felt the person on the other end of the phone couldn't quite believe what I was telling them - I felt like they were suggesting I was delusional when I said I was a self employed artist, and that they suspected the reality was I drew a couple of pictures in a supported group every now and then. Again, how judgmental and patronising.

How can applicants trust they will get real help when the staff are openly subjective at such an early point of contact? I understand that an artist's career path and working circumstances may be a little more unusual than a 9-to-5-office job, but some suspension of disbelief would be nice. A bit of recognition of initiative would be nice - it isn't easy to be self employed and it is NOT my fault, I am NOT awkward if my working practice doesn't fit what the person on the other end of the phone is used to.

I need their help in the future and am a bit more battle-scarred nowadays, so this time I will keep pushing for help. The difference is if this time the process is prejudicial at any stage, I will complain until something is done about it rather than backing away, at this point in my health, the consequences are that I would be out of a job. Which is allegedly something the government doesn't want.

Has Access to Work changed your experiences at work? If so, how? If not, why not?
Not yet. If it is correct that they do not assess you for a wheelchair at work until your local wheelchair service has re-assessed you, then this (in my case) can mean a long time waiting and struggling at work in the meantime. And if Dr. Evil takes my call again I'm going to get his name.

Happier things

I've done it! I've ordered one of these!

This comes on the back of me trying for ages to get an electric chair. It will happen, one day, but I first set the wheels in motion (or not as the case may be) nearly 3 years ago. One of the reasons I got my condition properly diagnosed was the onset of trouble using my upper body - with carpal-tunnel like symptoms in my wrists and unstable, subluxing shoulders. It's difficult to push if your shoulder starts going off exploring your upper back.

As a result of the diagnosis, we changed the car. We moved to an accessible bungalow. Lots of stuff. Y'know. Effort. Expenditure.

My local wheelchair service, who were always very good to me, agreed to provide me with a powerchair. The week before we moved into the bungalow. Oops.

So they gave me a letter instead, which said they'd assessed me, dotted the i's and crossed the t's, and the conclusion was I qualified for a powerchair, for me to pass on to my new wheelchair service in the new district.

But things are never that simple, and although I like to keep this blog focussed on disability-related happenings in life, I can't be bothered to type out in detail the whole saga about all the cr@p that came flying my way from that point on.

When your GP supports you to stop self propelling, the Professor who diagnosed you, your (iffy) Rhematologist, your former wheelchair service provider, and even your physio says to you "Have you ever thought've getting a powerchair? I'll help in any way I can...", you'd think that with much pleading, form filling, and effort, one might manifest, in a year or two, or three, maybe? Particularly when someone where you used to live had already put you through the system, complete with 18 month waiting list?

But not a sausage, mate, not a bloody sausage. Likely I'm doomed to start from the bottom of someone else's waiting list, before even going back to the bottom of the pile for my current wheelchair service provider. You couldn't make this up. And at this stage, I'm so sick of it all, that if one - just one - of these so-called organisations supposed to 'help' me called me up, and said "If we gave you a sausage, just one little sausage, not even a fancy Tescos Finest Pork-and-Apple Sausage, would you just, like, go away, like, forever?"

I'd say yes. Yeeeeeeeeeeeesssssssss. Because now, I've got myself a powertrike! Bugger off! Begone from me, cruel cripple baiting organisations! 16mph (for the price of my current manual wheelchair) nar, nar, na nar nar, get outta my way *biiig raspberry blowing sounds* *finger sticking up* *tongue out* Ha. Ha. Etc. And Stuff. Yeah.

Except. Access to Work. I still love you. Please don't tell me it will turn sour between us. Can I have a powerchair for work? A Balder will do.

Thankyou.