The afterthought at the back of the queue?

I wrote this about fifteen years ago, when ‘regeneration’ was a major driver. Not really very pleased to see that not only have we not got very much further, as outlined in today’s House of Lords report on the impact of the Equality Act, but in some respects our current situation is worse.


The afterthought at the back of the queue?

More disabled people live in poverty than any other group, and we often
experience exclusion over and above that of all other members of society.
Many of us have little choice or freedom over where and how we live: some
cannot even choose such basics as when to get up or go to the toilet. At a
neighbourhood level we often cannot even get into the shops or the community
centre. Local initiatives do not take our needs into account.
Despite the fact that disability is now recognised, in law, as an issue of
discrimination, and that it is widely accepted to be a human and civil
rights issue, and that we live disproportionately in poverty; despite the
fact that we are three times as likely as any other group to be unemployed,
and that we remain unemployed, on average, twice as long, and that when we
do have work it tends to be in low-paid jobs: despite all this being
recognised – our very existence and our systematic exclusion from society
was not addressed in the government’s recent proposed framework for the
National Strategy for Neighbourhood Renewal.
Disability has been traditionally seen as a welfare, medical, or charitable
matter. Thanks mainly to disabled people’s own efforts a civil rights agenda
is now in place and disability is seen more as segregation and exclusion –
ironically, often delivered by those very agencies acting ostensibly “for
our own good”. Disabled people have been relegated to institutional “homes”,
to a lack of public transport, with little real access to education,
training, and real jobs. The services which are meant to exist for our
benefit fail us, and even abuse us. We are lucky when we can get out of our
homes independently. This is real exclusion.
The proposed strategy says “The waste of potential holds back the country’s
prosperity.” This is true also of disabled people. If we are, ironically,
excluded from current and proposed social exclusion remedies this is a true
waste. If neighbourhood renewal is to mean anything to the upwards of 10
million disabled people in this country then it must explicitly include
disabled people, and address the causes of our exclusion.
The Disability Discrimination Act has been on the statute books for five
years now, although some parts of it are still to be enacted, and additions
have been called for by the Disability Rights Task Force. Independent living
is becoming a reality for more people as the Direct Payments Act becomes
more extensively implemented, albeit without co-ordination. The Building
Regulations have been gradually improving physical access to buildings over
recent years, and are due to be reviewed. The coming into force of the Human
Rights Act is imminent.
However, despite a proliferation of agencies, there is no real evidence that
any of the current employment or regeneration strategies and programmes have
made a significant difference to the situation of disabled people in terms
of their exclusion from society. What legislation there is necessarily
devolves from a national centre and has little day to day impact on strategy
and / or policy at a neighbourhood level.
Access to training and employment support programmes; capacity building;
lifetime homes; accessible public transport; ability to take part in local
democratic structures – rarely, if ever, are such initiatives designed to
specifically include disabled people in neighbourhood renewal strategies.
So how could disability issues be addressed? Success will require the
demonstrable inclusion of disabled peoples’ issues in regeneration
initiatives, with a clear plan for monitoring and evaluating our real
inclusion in initiatives and activities. Disabled people would gradually
become more involved in local initiatives – they would cease to be
“invisible”. Non-disabled people would become more aware of how to organise
in an inclusive way and would no longer see provision for disabled peoples’
involvement as “special”. Ultimately, disabled people would be – and would
be seen as – contributing citizens with a potential which is realised,
rather than discounted and wasted.
Finally, a society which currently sees little or no injustice in excluding
disabled people even from the social exclusion debate would begin to
experience a more positive response to the existence of disabled people in
our neighbourhoods. And the government would avoid potentially putting in
place further exclusionary barriers which will remain for twenty years or
(estimated date 2000)

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I don’t want you to care . . . . . . .

Vulnerable, disadvantaged, poor, ill; disabled people are currently being increasingly described as all of these and more. Meanwhile caring, compassionate champions, ready to save these poor unfortunates, are suddenly crawling out of the woodwork. What’s going on? Well, I have to tell you that Iain Duncan Smith is not the only one practising self delusion: most of the journalists and politicians commenting on the IDS resignation are perpetuating a cloud-cuckoo land when they unquestioningly repeat the tired old phrases about care. Here’s the grounded reality:
Like growing old, being a disabled person is not for softies! You need a range of physical and attitudinal qualities to manage day-to-day living with an impairment: you need to be resourceful and to have good planning skills. I have also found a hint of stubbornness to be very useful.

Disabled people are not magically endowed with ‘vulnerability’. Lack of access to decent education, poor and unsuitable housing, exclusion from employment, inaccessible environments, pitiful levels of social support – these and more are what render us vulnerable, not our impairments.

Although we are disadvantaged, it doesn’t necessarily need to go with the turf: see (2) above.

Poor? Well now, I’m guessing Steven Hawking isn’t poor, along with quite a few other disabled people, but the majority are surviving on benefits and we know how they’ve been cut to the bone. But it’s not just about income – it costs more to be a disabled person too, whether it’s an adapted car, extra heating, an accessible house for goodness’ sake. So it’s not a level playing field at all.

And ill? Well yes, some of us are ill some of the time, some are ill all of the time, others hardly at all. Just like anyone else. Geddit?

Do we intrinsically need compassion? This is a whole essay, if not a PhD. If you believe – as many popularly portray – that to be disabled is ‘a bad thing’ then maybe you think we do. But if, like most disabled people, you think that we need a fair crack of the whip so that we can get on with our lives, you’ll recognise inappropriate compassion for the red herring that it is.

And last but not least – do we care? I care about (ie I am concerned about) the fact that people automatically assume that, as disabled people, we need care (ie we need looking after). 

Nobody, but nobody, does absolutely everything for themselves, it’s all a spectrum with varying degrees of interdependence. It’s time the rhetoric of care was challenged. Time that disabled people were properly supported: time that ‘carers’ were properly recognised and supported: and time that the need for ‘child carers’ was past. A proper system of support that recognises all needs would transform the concept of care.

So no, I don’t want you to care.

PS this doesn’t apply to my family and friends, for whom I care (ie love) very much.

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AA trip to the pictures

I’ve finally been tempted out of my silence, so here’s the first blog for quite a few months: I hope there are still people out there . . .

‘When shall we three meet again, in thunder, lightening, or in rain?’  Well, not in screen three at Manchester’s new Home cinema, that’s for sure – because they say there’s only one designated wheelchair space – and here it is. (yes, it looks big enough for two to me, too)

My other half and I took the Metro into Manchester to see ‘Suffragette ‘ but were told we couldn’t see it because the single wheelchair space (above) had been booked the day before. After fuming over coffee we decided to watch ‘Macbeth’ instead In a different screen (which actually we really enjoyed).
However, this is a brand new building in a city that used to pride itself on its access. Indeed, Manchester still has an aspiration to be the most accessible city in Europe, yet I have to say that provision for wheelchair users in this new cinema and theatre complex falls short of the mark. 

If you have a friend or a relative who is also a wheelchair user then you can’t (ie, are not allowed to) see a film together in screen three. Another screen has a wheelchair space that is so small it won’t accommodate my wheelchair (which is not big), requiring me to sit at an angle, making it very difficult to talk to my companion. To access some of the screens you have to be ‘escorted’ through service corridors to get to the accessible space: I have a friend who got ‘forgotten’ as no-one came to escort her out again. The parking is in a multi storey at £10 a pop. 

Does all this matter, you may ask? At least there is provision, and it is outlined here. But, regardless of those access details, yes it does matter. When a Sunday afternoon visit to see a film of your choice is refused you, it feels hostile. When you’re advised it’s best to ring in advance it destroys spontaneity. When there’s a sign on the toilet door that tells you to ask a member of staff in order to use the loo you feel, well, belittled. When, in said loo, the emergency pull-cord is tied up out of the way (despite you having explained previously, nicely, why this should not be done) you may feel vulnerable.

Two points deserve further emphasis – a) this is a new building, and b) Manchester used to pride itself on being an accessible city. There are lots of good points to the access at Home, and the staff are great, but this kind of grudging provision lets everyone down.

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How does she know it’s broken?

After another long silence from me, here’s a guest post by my husband, Tony Baldwinson, about our recent disastrous day going on holiday:

OK, so we are going on a winter break holiday. A break we have done quite a few times before. Same airport, same airline, same destination, same hotel. What could go wrong?

Well, either not setting the alarm clock or switching it off half-asleep was not a good start. So, it should be 4am. But it is 5.30am, and the phone rings to say the taxi is approaching. Well, we like a challenge, and 25 minutes later we are pulling out on the way to the airport with time in hand. Still, we always add in some contingency time when planning our projects.

So, at the airport, because we have a powered wheelchair we have to check-in at three different desks. The usual one to hand in the suitcases, then at the airline kiosk to register the electric wheelchair’s weight and model, then at a third desk to register for the assistance needed to board the aircraft. All well and good, but it takes a little longer than usual today because the young woman at the airline’s kiosk for some reason is angry with her colleagues.

We complete all the tasks and have about 25 minutes to get to the gate. Security next, and this time the fast lane for rich folk and disabled passengers is reasonably fast, not just a holding area for people with buggies and wheelchairs. Some extra random swabbing of shoulder bags, but nothing too drastic.

Out of security and 15 minutes to get to the gate. Our pockets are empty and our hands are full of loose stuff. OK, let’s just stop for a moment at those seats over there so we can put everything back where it should be. We head over.

And then the wheel falls off.

The back wheel on the left side of the electric wheelchair is lying on the floor, and a greasy axle is sticking out from the chair into empty space. OK, deep breath, and we just put the wheel back on, as you do. Only the locking nut is missing. The motor just spins but the wheel won’t turn. So, we then disengage the motors to push ourselves manually to the gate. Only the wheel keeps falling off. “Oh! Oops!” we say.

At this point, our project contingency time is well used up and the project’s practical completion point looks pretty well knackered, to use a technical term. So we re-scope the project’s critical path, milestones and resource inputs.

Well, one of us is going nowhere fast, but the other of us is running fast back to the security desks, the nearest staffed area. And after a cool appraisal – is this passenger daft or what? – one of their staff comes along, sizes up the situation, and radios in for the cavalry. Two airport assistance staff and a manual wheelchair arrive. With 5 minutes to get to the gate, and the necessary bathroom stop on the way, we do it! The broken wheelchair goes in the hold, and we carry the wheel so it doesn’t get lost. We are not even the last passengers in the queue. But we are the most exhausted.

Half way through the flight we ask the cabin crew manager if the captain can radio ahead to let the next team of assistance staff know what to expect. She comes back a little later. “No problem. The captain asked me how does the passenger know that their wheelchair is broken? I said, because the wheel is in the overhead locker. Ah, right, he said. And Emily in our Luton office says hello and she is on the case.”

The airport staff we had left had been great too. And to show our appreciation, at the next Christmas party if they rewind the CCTV of the corridors towards gate 23, they will see a clip of some daft bloke pushing an empty broken wheelchair, hopping along on his right leg with his left foot stuck out, off the floor and against the wheel to keep it on its axle.

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Having signed up for this month-long blogging exercise on wordpress I’m now posting my first task; this is not my first blog by the way as I’ve been blogging – albeit erratically – for a year or two.
My first task is to introduce myself and I’m wondering where to start but I guess in the end it doesn’t make a big difference.
I’m married and have two grown children; for 30 years I’ve worked mostly in disabled people’s organisations, most recently as Chief Executive of a third sector organisation with £1m turnover, and am now semi-retired following a heart attack 3 years ago. Since leaving work I’ve started writing, both for myself and others, and a lot of my writing is on disability issues, but I’m also trying fiction and poetry: I’ve just self-published a book of haiku (and all my family and friends got one for Christmas!).
My main aim in blogging was to create a space where I could express my views on matters to do with disability – social and political rather than medical – having lost most of the avenues I’d had at work: I’ve also found though that it’s helping me maintain my networks and reach new contacts. My other aim – which only became obvious to me after several months – was to explore my creativity and see what might develop. And for this year I’m planning to bring some order and self-discipline to my erratic posting and aversion to deadlines – the fact that I’m writing this at 23.15 on day one indicates that I do indeed have a problem!
I like meeting up with friends, reading, playing online scrabble (since my husband won’t play on a board with me!), flying off to the sun in winter, and swimming.
And that’s the short version – maybe I’ll get chances to fill the gaps as blogging 101 progresses.

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At the beginning of this month I set myself a task of posting a blog a day as part of NaBloPoMo, or National Blog Posting Month. This period included a long holiday in Tenerife, and my return to the chill of late November in the UK: it was certainly easier to seek inspiration by the pool in the sun!
My blogs have been a mixture of comment, reflections on my period at a boarding school for disabled children, and a range of haikus, some of which tend towards the traditional models but others which explore a wider variety of topics. I like the haiku because it requires thought to condense what you want to say into the required seventeen syllables, and to still produce something pleasing. (Maybe it’s also because they say haikus are liked by amateurs!)
So, this is the last of my daily postings. I’ve had a fair few ‘likes’ and views from around the world, as well as some compliments, so a satisfying experience. Thank you.

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Unkept, unheeded,
Bitter words bring icy winds:
Broken promises.

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