Wednesday, 11 October 2006

An Ode to my Occupational Therapist

I explain something to her, very carefully, factually
and she says: yes, I see;
but I think she just has an emotional reaction
and acts on that
and goes to her supervisor
with the situation,
from her emotional perspective,
forgetting, or not presenting, my facts.

And her superior says:
but what about ....
and ....
and ....

And instead of OT replying
to her superior
with the facts I have given her,
she comes back to me
with the questions and the reasons
why not,
from her superior.

And my cogdysfunck has taken me elsewhere
so I have to find my way back
to what I have said before.

And her tone has altered
so that she is saying to me:
No, because ...
and I have to remind her,
if I can,
of my reasonings,
but I cannot due to tiredness,
cogdysfunck, fear, despair.

So I am overwhelmed
and cannot remind her that
I had told her the facts
and I haven't got the strength to say:
why didn't you tell your superior
what I said,
now and in the past,
to support my request.

And I feel doubly let down, because
First: she has changed her attitude to me
from first positive, when I felt relief
that she had taken on board
what I had said; to
Second: negative, questioning why
I think my request
should be considered.

It was reasonable, reasoned,
when first requested.
It felt unreasonable in the light
of her superior's questions.

Days later it comes back to me.
All the reasons, all the legislative back up,
So I write another letter
and do her job for her.

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Blogger Agent Fang said...

Oh Sally. Ditto, ditto, ditto. I have here on my desk a letter from someone saying all the things I told the wheelchair service a year ago. And the Rhematologist. And then re-told each, only to find out I wasn't 'allowed'. Saga continues for a year whilst I grind my shoulders and wrists to hell, only to get a letter this morning telling each and every one of them all the things I originally told them a year ago, only not from me, from someone with letters after their name. So now I will have to go and see them all, all over again.
Good luck. Fight the good fight. Boldly Go!

Thursday, 12 October 2006 at 13:01:00 BST  
Blogger Sally's Life said...

Cheers Agent Fang !

And our experience is not unique - this is happening all over the place to hundreds and hundreds of other Crips.

After eighteen months dealing with the NHS wheelchair service for an electric wheelchair, I did wonder if it was worth the effort when they granted me a voucher worth less than 20% of the cost of what they had assessed me for. So, more letter writing, begging for charity.

And on and on, as always - fighting the GOOD fight.

Bless you x

Thursday, 12 October 2006 at 20:20:00 BST  
Blogger Agent Fang said...

Ah, well, I suppose it's all character forming. My fevered brain searches for answers to the question of why human beings, who frequently see others in the predicaments we are in, lack the empathy to realise the anguish this system they administer puts us through. On a purely human level. Maybe there's a secret strategy that goes along the lines of "Life as a disabled person is hard. Those experiencing progression in their condition need to be prepared for difficulty. Henceforth, release the administrators!" Or something like that. :0P

Friday, 13 October 2006 at 12:29:00 BST  
Blogger BloggingMone said...

This is a system I just don't understand. Someone I know wanted to change from a manual to an electric wheelchair, because over the years she just did not have enough strength to operate it. It would have given her the opportunity to pick up her daughter from nursery, to do the shopping and that like. She was given a home help istead, she did not need. She was offered money for a person to do the shopping, which she did not want. She was also offered a paid person to pick up her daughter, as long as she was only willing to stay inside with her manual wheelchair. This went for a year or so. In the end she agreed to get all that paid for staff and employed her sister, her mum and a friend, who got the money for doing almost nothing, because she can manage her household, husband is doing the shopping and her mum picks up the daughter anyway. All three saved the money they were paid and gave it back to her, so after a while she was able to buy her own power wheelchair. How stupid is that??
So keep on going, you've got all my mental support!

Friday, 13 October 2006 at 13:03:00 BST  
Blogger Sally's Life said...

Agent Fang - one of my home helps, a super lady who worked for Social Services years ago, says Social Services and the NHS make it hard for disabled people, hoping we will die first, to save NHS and Social Services money !! Although I don't quite agree with that, sometimes in my darker hours ....

"lack empathy" - I think they begin their training with a sympathetic (as opposed to empathetic) attitude, but bureacracy and budget cuts and bosses grind them down. That was one of the points of my Ode - the emotional reaction of sympathy does not help - their emotional subjective response to a client's requests and needs is bound to fail the client, as they lack not only the strength to maintain empathy (putting themselves in our 'shoes') but also, often the intellectual rigor to deal with our situations objectively. All I ask is that I am objectively assessed to legislated and published criteria. They can keep their emotional subjective response to me - and their sympathy - just do the job properly that they are paid to do (rant rant rant...)

Friday, 13 October 2006 at 13:32:00 BST  
Blogger Sally's Life said...

Hi Blogging Mone - welcome home, how was the hotel room this time ?

My Ode and your's and others' comments have vented the steam of a long pent up Rant. Maybe this should be a separate post, but I'm on a roll, so here goes ...

The resistance to 'allowing' service users to change from manual to electric wheelchair, is universal. I was told by an OT that I would get lazy and become more ill if I used an electric wheelchair. I reminded her that as I was forbidden to self propel a manual chair in order to spare my joints, the NHS had given me a manual push attendant wheelchair but the NHS had not given me an attendant to push me (male, n/s under 60, single, intelligent, personable would be good !) - they are quick to control, slow to allow self determination. Left over patronising paternalism.

I do like your friend's solution with her family - now that is what I call 'creative accounting'.

However, wheelchairs are just one facet of the whole mobilising social inclusion scenario. From others' blogs, my understanding of the system of funding of equipment for disabilities in USA is that medical aid/insurance schemes fund and maintain electric wheelchairs, which are renewed every five years, so there are lots of fairly independent wheelchair users, and there is an incentive to manufacturers to produce varied wheelchairs and buggies. But all the USA bloggers seem to live in cities or suburbs and may not be representative of the whole nation ! But there may be a connection between wheelchair provision and city/town based living in the USA. So my questions is do the majority of wheelchair users in the USA have wheelchair accessible vehicles to transport their wheelchairs - through a national/regional government funded scheme to distribute WAVs like we do here in the UK ? What is the system in your country Blogging Mone ? Any comments from USA bloggers ?

Here in the UK, the National Health Service (with regional funding variations) fund wheelchairs - in this region only at the very basic level of self-propelled manual or cumbersome manual attendant push wheelchairs, or basic electric wheelchairs with huge turning circles which don't work easily in most peoples' average sized homes. So self funding of wheelchairs, or top-up funding, often through applications to charities (for those able to do so), is the norm. And it is not easy. However, through the state funded benefits/income system, via Disability Living Allowance, we have the Motability Scheme, which oversees a system of vehicle leasing and administers central government grants for adapted vehicles, which is fantastic and enables people like me to live wherever they like/can afford, even in fairly remote rural places. So I can go anywhere and take my wheelchair with me in the back of the 'van'. The cost to me is the mobility component of my DLA (currently £43 per week !)and in return I get worry free wheelchair accessible private transport, insured, serviced and maintained and even rescued if I have done something silly (field flints splitting tyres !). So, thanks to my wheelchair accessible vehicle I do not have to live in a town, city or suburb within wheeling (manual or electric) distance of necessary facilities.

I may have misunderstood the system in USA and over simplified a complex system here in the UK, but I would be interested in what other bloggers think about this.

If I have got it very wrong, and brushed aside very real unsurmountable transport problems of other disabled bloggers, I apologise, and am open to being educated about the reality of their lives.

But I have to say that I feel very strongly that no one who needs a wheelchair should not have a wheelchair accessible vehicle - because everyone is entitled to leave their home and travel privately (to hell with public transport) - and if they cannot drive, or if they don't have a partner, or a partner that can drive, then Motability pay for driving lessons, or Social Services have a statutory duty to provide a budget to employ a PA to enable social inclusion, including to drive the wheelchair user. But you have to fight for that right, like some many other rights, and not everyone can fight that good fight. I do know that many wheelchair users prefer to keep their DLA to pay for taxis, and if that is what suits them best, rather than a solution forced upon them, then that their choice and good for them.

Another thing I feel strongly about is people with disabilities being described as 'house bound'; I hope I am not inadvertently giving offence, and I may be treading on others' dearly held opposite views, but I do not accept that people with disabilities have to live in unsuitable accommodation that they cannot leave independently or with assistance, when THEY wish to, (i.e. in narrow doored flats above ground level with unreliable or inaccessible lifts); without access to private outdoor space and fresh air, preferable a garden with living and growing things. We all need daily access to fresh air in private space. We all need to feel that we can do that if we want to, when WE want to. When we are feeling ill, gross or knackered, a five minute recline in a reclining wheelchair outdoors each day surely must be good for the soul, even if it is wrapped in duvets to see the hoar frost on the spider web - yes, I did.

Oh dear, what a long rant.

Friday, 13 October 2006 at 14:25:00 BST  
Blogger Sally's Life said...

Welcome, and thank you, to this occasional visitor, who emailed Sally with this comment:

" So enjoyed reading about your wrestles with red tape as I have just relocated so fighting similar fight. My only online presence is a website I am using to recruit PAs. I am terrible at emailing and blogging but just wanted to say thanks for articulating some of my feelings! "

Thank you - your visit and comment is appreciated.

I have not included the person's web site address but can pass on any requests.

We are the few, camping out on the tip of the iceburg.

Friday, 13 October 2006 at 15:34:00 BST  
Blogger BloggingMone said...

I personally only know two people using an electric wheelchair and both of them favour a manual one inside their homes. So I don't know much about what is done to make a home accessable for an electric wheelchair. In the neighbourhood we have a so called "accessable for everyone house", which seems to be OK for someone with an electric wheelchair. There is a lady living there, who cannot use any other wheelchair.
As for a car in which to transport an electric wheelchair: I know that there is the possibility to get one's driving liscense funded, to get the car adjusted to one's disability, to get equippement to store the wheelchair on the roof of the car (whatever that is called in English...) and to even get a car paid for. BUT - and that is the problem - only if the disabled person needs a car to get to her/his workplace or vocational training. If that person is paying a certain amount of money from his/her own pocket it is also OK to use it for private purposes. But one has to be working in oder to get a suitable car in the first place.
For everybody else there is a system of private or semi private bus shuttle services mostly run by charity organisations, disabled people can use. One has to call them in advance in oder to get picked up. It isn't ideal, because it does not allow to be too spontaneous, but it seems to be very reliable. However, it is more difficult to use when living in the country side.
For all kind of medical reasons it is OK to use a taxi, which is paid for by one's health insurance (we do not have a NHS). There are two taxis in Hamburg which can carry an electric wheelchair. And again, this service to book such a taxi is not available in rural areas.

Sunday, 15 October 2006 at 10:32:00 BST  
Blogger Sally's Life said...

Thanks so much BM, that gives me a good idea of your country's system.

From what you have described, it seems the work ethic rules and the right to a inclusive social life - via a wheelchair accessible vehicle of one's own, is not within the state's remit. So for people unable to privately fund a WAV, there is no right to private transport. I feel extremely fortunate.

Through taxation our health and social care is creakily funded, and our welfare state, for all my moans, does address my Human Rights to a large extent. Here we can, to a certain extent, individually determine where and how we live, provided we have the health, stamina and confidence to ask for it. I know people within this area whose basic right to a socially inclusive life is denied because they are not well enough, or confident enough to pursue it.

I am unable to work so I no longer contribute taxes into the national pot and I am vey aware of this. I use any energy spare from dealing with the system, to work voluntarily for disability issues, to change things were possible, as do many disabled people if they can.

No one country, no one system, provides for the ideal of a disabled person's ordinary necessary needs. (I am starting to tie myself up in knots here.) Where that divergence from an ideal provision began, what that divergence is founded on, is a large question that is, I still hope and trust, being looked at by people in academia, the civil service and in government.

Sunday, 15 October 2006 at 11:05:00 BST  
Blogger Kiki said...

I'm glad I found your blog tonight by happenstance. I also am into Jung and my boyfriend is deeply, deeply into Bach. Tonight he played harpsichord for me.


Monday, 16 October 2006 at 06:51:00 BST  
Blogger Sally's Life said...

Hi Kiki, thanks for stopping by.
A boyfriend playing Bach harpsichord - bliss, beyond a mere forte piano.

Wednesday, 18 October 2006 at 09:24:00 BST  

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