Crip_tic

Blogs on everything from social justice to toilets!

disability

Disabling views - fit for practice?

An article in the Guardian 'What does it take for a racist to be ruled unfit to teach' caught my attention a few years ago which rears it's head all the time. The report concerned the case of a teacher who is also a BNP activist and who was cleared of racial intolerance 'despite claiming in an on-line forum that Britain was a dumping ground for the filth of the third world'. He later resigned to continue to promote his values.

Toy wheelchair with doll
Extreme racist views of any kind, held by a teacher, are hardly likely to promote equality of education? Indeed, it could be argued that classrooms could easily become a nurturing ground where racist behaviours for example are permitted in the classroom or even rewarded.

Teachers are role models, the way they interact with pupils helps form a child's own beliefs and values. Can a teacher with extreme views interact with black, Jewish, traveller or gypsy pupils and offer equality within education? Studies such as
Vandeyar and Killen suggest that racism can manifest in selective empathy, discriminatory seating arrangements, devolution of authority to students based on race etc. Equally, the language (including body language) of a teacher can the development of a child.

Whilst much is being made of the racist issues. What about disablism? Read More ...

My book chapter is published.

Three years ago I was asked to write a chapter for a new book - and this month it was finally published.
Screenshot_12_06_2013_16_01-2

I've written short pieces before - but this was my first experience of writing a complete chapter for an academic book. Several people were involved and I was asked to do what would become chapter 6 about working with people with physical impairments. (Well I was assigned the title of working with people with physical disabilities - and I'm please I could change this to set the perspective of my writing!).



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Merry month of May.

This was the merry month of May - and my take on some of the disability news this month.



The Colin Brewer case exploded, I nearly exploded - and a new disabled logo!
Screenshot_05_06_2013_18_34

Here were my thoughts.


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A year on: January

Comparing January 2012 with January 2013...

January 2012



Family life

tag
Just before Christmas my father-in-law died. He took his own life after many years of living with mental health problems. A suicide bereavement is particularly hard on everyone. It was a great shock. We celebrated the time he was able to share with us at a lovely funeral and I crafted a tag for him just like I did for my grandparents. The month was filled with lots of tears, prayers and difficult days. One person said suicide is 'selfish'. They are wrong. Is dying of cancer selfish? Dying from an illness it not selfish.

It's sad that so many people do not understand mental health. However, there is no shame and when talking about it with people they often share stories of their friends and family who lost their lives in the same way. You want to be the only person this has happened to because it hurts so much - at the same time it's comforting that there are people who understand and have been through the same thing.

Pets and Wildlife

January brought some great wildlife watching opportunities with Borris Box looking hopeful for a our nesting blue tit, Borris.

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Private v. NHS - wheelchair part 6

Private verses NHS - my experience of wheelchair services.

Last week I went for a private assessment to find a wheelchair cushion. I have been feeling a lot of pain from pressure on my pelvis and in the middle of May (approx) I contacted my local wheelchair service clinic so they could supply me with a better cushion.


Time from initial booking of an assessment to providing a solution:

NHS: 4 months and ongoing. Refuse to supply a cushion until they have bought me a new wheelchair.
PRIVATE: 4.5 weeks (of which we were away for one week which postponed the assessment) until a cushion was purchased.

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Wheelchair downs part 3

Wheelchair clinic phoned last week about 3 times in the same day.

This is the latest story from them. In short they said that the best chair for me is the Ibis because of the low seat height. I said what about not being able to go in the car. The response was that I would just have to use it in the house and not go out in the car in that chair! I said how am I supposed to go out for the day or on holiday if I can't use my car. They said 'good question' but they can't offer anything else.

Now we have obsessively done our homework - i.e. Kevin has done nothing but read up about all the wheelchairs available in the UK and charted out the vital statistics! I had to ask them why they hadn't suggested these other chairs (Tango and Salsa) and they admitted to having them in their catalogue but that they were too high. Well in actual fact the height of two other chairs is pretty much the same as the Ibis give or take an inch. Of course an inch could make a difference but it might also be ok, so I said why can't we at least see if I can transfer into the Tango. Read More ...

Hot Wheel(chair)s full version part 4

So, today we got to see the chairs in the flesh - Kent Mobility brought us the chairs we especially wanted to see and a couple more he thought might be ok. The appointment was easy to make and they were much more knowledgeable than the rep that worked with the wheelchair clinic people.

It was great, he got them all out of his van - the Alex, Tango, Ibis and Puma and we got to see them in the flesh! It was reall useful to see them all side by side and compare what they looked like and examine the merits of them. No nurses, no watching other people try them out, nobody picking holes in how I transfer or how safe it was to let me drive one - we could do what we wanted and needed to do.

We found out why the Ibis and Alex has central fixings, under the chair, for the car straps to attach to - they are Dutch chairs and in Europe wheelchairs use a different sort of tie-down because the cars are converted differently. Now it makes sense.

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Wheelchair ups and downs part 2

Well we nearly got somewhere.

Last week the wheelchair OT and a rep did a home visit.

I had wondered if they would show up considering they had my address down wrong (even though I told them what it was). They phoned up saying they couldn't find the address a few days before when checking their map - so that was lucky! They arrived ok.

They won't release a wheelchair to someone unless you can get around your home with the footplates on. I don't know many wheelchair users who keep them on around the house and I don't currently - it's more practical and I put my feet up on boxes etc that would be the height of footplates when needed. Still, they think I need to keep them on so that's what we went with …. and indeed the rep came and drove around the house confirming my potential new chair (Ibis) would be ok. First test passed. Read More ...

For the want of a nail.

For Want of a Nail
This great proverb is a lessen in logic. It should be taught to every social care and health care worker. It reminds us how a failure to sort out the little things can lead to much greater disasters.

In this case - I needed a nail and the wheelchchair clinic have decided to just replace my current set up with a brand new horse instead (one that is not fit for battle nor shoed correctly!).

I'm talking about how I went in thinking we would explore different wheelchair cushions (as I'm getting sore with my current one) only to find they want to give me an enitrely new chair. Read More ...

The three Ps

Over on CripticThoughts, I posted a picture of my new hand made / adapted knickers.

This is the more detailed version amidst the taboo that is menstruation.

Periods, Pants and Poppers

On Thursday I started using a hoist with my new PA. Instead of the hammock type slings people use, I have a vest. It's like a waist corset that holds up my upper body and straps that go under your legs to hold them up too. You dangle from the beam in a sitting position.

The problem is getting knickers on. It's really difficult because of the vest's leg straps which prevent you pulling them up. You have to take of the leg straps, lift up each leg, pull the knickers as far as you can towards your groin then re-attach leg straps making sure that they are not touching the knickers before hoisting up (where they can be pulled up to your waist). It can take a good 15 minutes at best.
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What have we in common?

Today is Bipolar awareness day. I want to write about the things I have found in common with my friends who have bipolar. Sometimes people are surprised by this as they see mental health as 'different'. I think on many issues of equality, health care, social care and life in general - we share the same joys and woes in many ways. *By 'both' I mean both me and my friends who have bipolar.

Historically

Historically there has always been a division between people with different impairments. When we hear the phrase 'disabled', we tend to think about people with physical/sensory or learning impairments. Not so much now, but I can remember 15 years ago when organisation of disabled people did very little for those with mental ill health. Campaigning and awareness of mental health illnesses and how they affect individuals and families was left to charities and organisations that supported people purely in the area of mental health. It felt very much an 'us and them'. I don't see that so much now. It feels more like a 'united we stand' on many issues.
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It's disability Jim…but not as we know it

G'day folks - it's fun filled Naidex time (next week) and we we start this week's blog with my personal thoughts on their hot new disability products showcased in this pdf file they produced.

I'm going to give my first impressions of the products having just opened the pdf and had a glimpse.

exhibit 1
The first products that hits me, ehm I mean is presented first is this thing. Apparently it's called the Baros Mini Shuttle from 1st call Mobility. I'm sure I've seen a similar thing in a soft play area for 2 year olds. They will certainly see you coming in this for transfers around a hospital. It's loud, ugly and chunky. Moving on…

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Disabling farming barriers.

Diversity within British farming

Because there is such variety with the agricultural industry, there are many opportunities for disabled people on many levels. It is coming to that time of the year when thousands of people will be exhibiting or attending their County Show - a showcase and celebration of the essential role of agriculture in the UK. If you have ever visited your County Show, they are a great opportunity to engage people in the many aspects of agricultural and country life. However, there is usually a concerning omission which I will highlight in my blog today. Considering the statistics below, the needs of disabled agricultural workers are going unheard - and unsupported.

With as many as 8/10 farmers meeting the DDA definition of 'disabled' - maybe it's time to remove some of the barriers for disabled workers in this field?


Read my blog about disabled people in agriculture or view a short video below.
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Buses, Trains and Automobiles

The current Channel 4 'No Go Britain' report got me thinking about this last year.

Due to needing to get to a London Hospital, I had to use the train for the first time.
I'd avoided trains all my life because of the horror stories I'd heard from people about not being able to get on, get off, have assistance or ending up at the wrong destination.

Well, I did have experience of the Docklands Light Railway in London - you can read the j
oys and woes here. In summary level entry and access was great until the lifts to the platform broke and we had to travel on to the next stop and walk back through the streets. A ten minute car journey would have replaced the half day route via the railway system. Rush hour was a no go zone. I couldn't move through the people very well and they kept bumping me and knocking my hand that steers my chair - so really they ran themselves over.
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Going on a bear hunt

Since Children in Need began, disabled people have embarked on a yearly bear hunt.

What is it that makes some disabled people hate it so much that they light bonfires adorned with Pudsey bears to mark the occasion?

Of course the charity is not just about disabled children - but children who are in need for many reasons both in the UK and elsewhere. However, it is the disability related elements that have caused great concern and protestors are rearing their heads again in times when children’s services are being slashed in government cuts.
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I've gone all musical again

I've always been a musical sort of person, playing the violin, piano and harp - not to mention dabbling in a band on a xylophone and a bit of clarinet! When I lost the use of my arms and then couldn't bend my fingers it all ground to a halt.


I've played around with Garage Band on my Mac for a number of years but you can't really use a typing keyboard to play the piano - and tapping with a Wacom pen on a tablet is not that brilliant.
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Assisted Living.

It was an emotional evening. I was prepared and as such chose not to watch the so called documentary headed by the BBC around choosing to die. My Twitter time line was quite enough. Filled with comments from horrified disabled friends, strongly opposing and frightened by the content.

"It's terrifying. My impairments are so much more severe than that bloke - it's already been implied I'd be better off dead. Awful." [Becca, via Twitter ]

We have heard the debate before, we have lived experience of being encouraged down this path.

People want me dead?




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Becoming a carer?

Not a carer...

In 2000 I was living in a rented apartment in Hertfordshire. I had live in 24 hour assistance most times or day and evening support with someone on call overnight.
Sometimes when I was in-between assistants I used carers from various agencies. The support was of variable quality and pop in calls were just about all Direct Payments afforded me. On the whole though, I was pretty self sufficient.



Over the coming years I met my future husband, Kevin, and secured a full time job in Kent. I never wanted my husband to become a carer and we'd talked about this. We were both concerned that at the time, if we got married, he would have to forfeit almost 50% of his salary to fund my assistance according to the old Independent Living Fund rules. Equally, I didn't want him to think that marrying me meant sacrificing his work (either because it wasn't financially working out or that a care re-assessment in a new local authority might not fund the same level of support). On top of this was, and still is, the inability to have savings of any substantial amount. The allowed limit is still very low. These were all, largely, unknowns as it was far from clear how financial assessments would impact us. Read More ...

Full steam ahead...

I have an article on traveling by steam train on Disability Horizens

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Equality - Entering the church by the back door.


Yesterday, thousands of people witnessed disability injustice in action during the Papal Mass in Glasgow. Many won't have recognised it, indeed the individuals themselves may not identify that it happened to them. It was the most undignified spectacle of no reasonable adjustment I have ever witnessed.

I was watching Sky News and listening to the commentary as several people (who had been been singled out prior to the event) received communion, the Body and Blood of Christ, from the Pope himself.

Holland to Harwich by ferry

Journey: Hook of Holland to Harwich via Stena Lines - Hollandica Superferry

This ferry was launched in April this year and will join another Superferry in Autumn. These cost £375 million pounds. Shame they didn't spend much on thinking about the overall experience for disabled people. Granted the ship had some nice touches but compared to our first crossing, the staff support was very poor.

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Harwich to Hook of Holland

Journey: Harwich to Hook of Holland + Overnight stay at Premier Inn

Premier Inn is situated at the port next to Lidle and adjoining a Brewers Fayre. One night cost £61 at the time we booked in January. We had to stay overnight because it meant getting to the ferry 45 mins before we sailed at about 9 am. Much less than 8 hours sleep and my body falls apart. We had a roll in shower, plenty of space and the sink was at a good height to wash my hair in. Lacking in personality like all of these sorts of rooms - it did the job for the night and we were relatively comfy with little noise outside.
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DLA Assessment

So, medical reassessment for all in 2013?

If by existing claimant they also mean people like me with progressive impairments / life limited then what a waste of money.

I remember my first two medicals when I could walk a few steps. It was tearful and stressful - like most of these things seem to be.

The first test was scheduled in a GP surgery (considering most GPs had never heard of my condition and 20 years later still don't).

The test was up a flight of stairs.

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DDA - sword or a poking stick?

Stairs
In February 2010 I felt I had been discriminated against, as a disabled person, by Waterstones Book store. I was deeply hurt by what occurred that day and decided to use the Disability Discrimination Act. This is my story of that day and the events that proceeded it. Read More ...

When is a sex gadget not a sex gadget?

I have blogged before about the price of equipment once it is given a disability label. Now I have found another layer - the sex gadget. It seems to work as so:

Product without a disability label = £X
Same product 'for disabled people' = £X + 50% at times.
Same product for sexual intimacy £X + less than the above!

Here is an interesting example:

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Loo story with wobbles

Archive from 2006

I noticed a recent article where a woman in Chicago went to use the loo in her local book store and is now suing them

In Chicago, a woman claims an unsecured toilet seat in a Borders Bookstore caused her to fall and become “permanently disfigured.”

The seat “shifted to the side,” causing her to be thrown onto the tile floor.

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Too pee or not to pee... that indeed is the question

During my training I often talk about the most important things in my life that give me personal choice and freedom. It fits nicely into the how Direct Payments could be used more flexibly and demonstrates rights and freedoms disabled people aspire to.

My number one thing in life is the toilet - and to hear the full story you will need to sign up to a course! So, of critical importance was to make our own bathroom accessible (cue clever hubby in the DIY field). That was in about 2004 and we are still completing it! Anyway, here is the story so far because I know others have written to me about the toilet in particular - so I have moved it onto the web again.

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Naidex - the alternative review.

April 2006 - An alternative view to the value of Naidex.

This week is Naidex week. For all you none-disabled sorts - that's the NEC Birmingham Show for all things related to disability equipment.... or at least that was my memory of it.

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Some archived blogs

Today I am moving some blog posts from a past blog, over onto IforI. Starting with this one from the Archives:

January 2006: Maidstone Hospital - no access


Today I received a phone call saying they wanted me to go for a Barium swallow on Thursday. Despite having changed my name twice at the clinics they still had me under my maiden name which confused the issue. I then said a 'by the way, I'm a wheelchair user', to which they replied 'ah, that could be a problem.' Does anyone actually read medical notes - its pretty obvious! Apparently the room where they are doing them is not accessible due to moving around of departments or something. The lady was very polite and said she would find out what they could do....

A later phone call that day.....

Now they had booked for me to have it in an accessible room..... I then enquired 'how do you plan on doing this'.... she said 'eh... why' to which I reminded her that I could not sit unaided out of my wheelchair (although she said they had a hoist to get me out of my chair) and also could not hold a cup to drink the barium 'meal' for scan of how I swallow! She said that could be a problem and would have to consult with someone higher up as to what to do and so as to not waste my time or theirs coming in until they had worked something out.

So there you go. It's easy for these medical types to say ' do a scan' but they never put any thought into the needs of patients with impairments.... 0/10 my friends.

Part two... January 26th, 8 weeks from seeing my GP.

So my appointment came through giving no indication of access so I had to phone them to check.
It took two laps of the car park to find parking and then an icy walk into the main building... brrrrrr.

FROM A to B

Anyway I walked from shall we say part 'A' of the building all the way to part 'B' at the opposite end of the hospital.

FROM B to A

On arrive at radiology in part 'B' I was told 'sorry' you need to go to CT as they are doing them up there today'...... so off I went with my PA. There were no signs and asking local wards where this quite critical part of the hospital imaging department is - they hadn't a clue.

Eventually I worked out is was in the cancer unit - back up at part 'A'. So off we went.....
On arrival at reception I was told 'sorry, yours is being done at radiology'.... grrr......

FROM A to B

Back we plodded along miles of corridors to the opposite end of the hospital again.... 2 miles later....

Eventually I had to transfer (for transfer read ' be dragged/slided') to three different places because of different height beds / tables etc.

Eventually I made it and got the thing done - with no great conclusion as to why or what to do about my problem... Still at least it wasn't anything cancerous or that would have topped the day of nicely!

FROM B to A

All that remained was to trek back to 'part A' to get in the car.... now where was CT again?

Blogging for Equality

Blogging on life as a wife and wheelchair user. Please do share my posts but don't cut and paste to insert into your own articles, thank you.

 

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Blogging Against Disablism Day, May 1st 2013

 

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