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.

I suggested that, at home, I would see if I can transfer into something a little higher. They very patronisingly told me to try with a slip/glide sheet and only if a nurse had trained us and was present to oversee!! For goodness sake - talk about putting up barriers. We transfer onto different things all the time in the real world! Three times they told me to not do it any other way!! That made me really angry.

Anyway, they then phoned up later and said don't you dare try it, come down to us and see if you can transfer and they would also try me on a 1 inch high cushion. My bony bit of my pelvis sticks out more than this so how a 1 inch high cushion is going to give pressure relief I'm not sure…. I am skeptical.

I asked about the voucher scheme - they said they don't give vouchers towards a private chair - in fact they opted out of giving people vouchers for powered chairs! I didn't think wheelchair services could do this but I looked on the government website and it said they 'may' offer the voucher scheme. So it's a postcode lottery then! If we lived somewhere else we might get money towards a chair not on their catalogue. :-/


This wouldn't be for a good 3-4 weeks!

Tags:Nhs | wheelchair | disability

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.

I tried out the Tango (which has tilt in space) and it was a good drive (how a chair 'drives' in terms of how responsive it is to joystick movement etc is programmable). It pulled a bit driving over carpet but was smooth indoors and felt the same as my current chair on the road. Going up the ramp into my car (Berlingo) was good and we didn't bottom out on the rear safety anti tip castors (which are fixed). I've hacked mine off to be able to tip back to get up curbs.

Transfering wasn't too bad but Kevin did find the rigid front bar hit his legs (mine has no rigid bar in the front and a cut out bit of the seat board that Kevin puts his leg in to get closed and make the lift/transfer easier).

Next, in the blazing 90 degree sun, we tried out Alex. Alex has bells and whistle. It has three settings (which you can tweak) for indoors, pavement and road use. Road use get's you to 6 mph (8 I think on bit tyres) and I can say without doubt - speed is GREAT. Alex also has tilt in space and raise. Raise is slow - very slow but got me to what I felt was taller than Kevin (but he said I was just a little shorter than him). In raise mode you can move very slowly foward - like the brochure says if you want to graffeti a wall!!. Alternatively height would mean I can see into zoo enclosures and museum exhibits that you can't from a low height.

I liked being up high - for a short time. Everything I looked at appeared more 3D and not as claustrophobic - I could see behind things and further into the distance. The world looked a bigger place. It's a perspective I'm not used to but I think there are lots of things other people see that I just don't because I'm too low to the ground. My brain wasn't sure what to make of it! Either that or by then I was getting sun stroke.


However, Alex comes with drawbacks - a well built chair with rocking type suspension (like those old fashioned rocking horses that had a swing rock motion) and some great features. Unlike the Tango, we would have to buy the chair privately, and sadly the base is on the border of being too high (the chair I tried had a big spongy cushion and back support which was like sitting on a cloud). Even with a smaller cushion we might not be able to get in and out easily.

We tested going up the car ramp and the anti-tips bottomed out - had to use a bit of force to scrape forward up the ramp. Not was we expected and my ramp isn't steep at all - much less steep than say the ramps to get into London taxis.

Alex drove very well but was quite rocky - (bouncy backwards and forwards) when moving around the house. Not so good when you go bra-less !!
Carpet drag was greater on the ribbed tires - I prefer smooth tires. There is also a price difference of a minimum of 4K extra for Alex compared to if we bought Tango - and that's without thousands of pounds worth of specialist seating. Eeek.

One of the good things was that we found out we could access their private OT for an independent assessment for a cushion/back support. We would have access to any product on the market. The only drawback would be that if we bought a cushion that felt good and fitted in with the assessment results for a good match - it might not feel so good a week down the line when I've tried it out sitting on it all day. We probably couldn't take it back like we could at the wheelchair clinic (who still refuse to even get me a temporary cushion to relieve my stinging bum).

This guy said something very sensible - we could start fitting me with a cushion by sitting in a manual chair to see what works - then just transfer it to the chair I choose….. hurrah. This is what the wheelchair service wouldn't even do. It makes total sense so they are phoning Monday with an appointment.

Going privately - we have got further in two weeks than in the last 4 months. Still lots of decisions to make but this has been really hopeful :-) .

Tags:Nhs | wheelchair | disability

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.

After a two hr visit of measuring and stuff we (the rep) tried the Ibis chair in the car. All I can say is what manufacturer in their right mind puts the wheelchair tie downs behind your legs and under your seat in the middle! FAIL. No real world application went into the design of those tie-downs points.

Normally a wheelchair has four straps holding it down in the car (the user being held in by the car seatbelt). Each strap goes to the four corners of your chair.

These straps are positioned (in the car) at about the distance of a chair's width apart for safe and easy attachment. When attached to the central Ibis tie-downs the straps don't retract properly, end up at the wrong angle and decapitate your ankles!

So, this chair is out of the equation unless they come up with a safe and easy way to tie down in the car. They went away with a 'leave it to us' to investigate.
Apparently they had given (prescribed in their speak) the chair to many people with cars - so I guess those people just struggled on or didn't realise their new chair wouldn't go properly in the car or now have no ankles?

I'm having other doubts about this chair - we will only be able to get a small degree of tilt in space (i.e. this is a reclined position where your whole chair tilts back not just the backrest). Generally I read that the greater the tilt the better pressure relief I will get which makes sense assuming my bendy back will be happy with that position.

So, Kevin has been building a database of potential chairs (that the wheelchair service don't provide) that we might be able to get using the NHS wheelchair voucher scheme. Conveniently the OTs have only mentioned this in passing as a kind of whisper - so they clearly are not keen on the voucher idea. However, I think we have a legal right to the vouchers so will have to see how it goes. We could use them to part pay for a better chair of our choice.

One of the one's that I like is the 'Alex' chair so have arranged a demo/test drive for the end of next week - and maybe the chap can bring some other chairs to try we are interested in if he can get hold of them. Meanwhile… my numb and sore bum continues.

Tags:Nhs | wheelchair | disability

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.

My current chair is built pefectly for me - evey inch of it suits what I need it to do functionally. It's the right height for me to see out of the window in my car and low enough to get under the dining room and computer table. It's exactly the right height for people to lift me out of and the right amount of room to put my hoist sling around to use the bathroom.

It's got special features my husband made - like the joystick with a flick switch that is just in exactly the right place to reach and the right 'springiness' for me to independently lower my joystick to go under a desk. It's also got a USB port to power my phone which is super useful.

It's got pegs on the back to hang my vent on and fixings for seatbelts that keep me upright in the car.

The front wheels are just the right height and place so that I can rest my feet on them when sitting on the loo - so I don't fall off!! The arm height is perfect to get precision control and use the joystick - and a great height for me to stick my feet out of the bed and rest them on the cooling arm of my chair on a hot night!

There is more… but I will keep it short.

Don't current wheelchair have these features?

No. The ones given by the NHS you can't adapt in any way privately - you get what their workshop can / are prepared to do and what is 'safe' and 'assessed' as a need!

You will not find a powered wheelchair on the market with a USB hub! You won't find one with a drop down joystick like mine. The latter is a HUGE problem because without a joystick that moves away from the desk (or drops down) I won't be able to eat at the table or use my computer! They do make some with swing away arms - but I can't operate these as I don't have much movement in my limbs. It will be up to the workshop to see if they can engineer one like my husband did.

The NHS would buy the new chair, fit it with cushions and seating systems, and then give it to the workshop! If the workshop can't do anything they would probably send me home unable to get to tables or forced to use a wheelchair table (which is not practical or suitable as I have to have different height surfaces much higher than my waist). That a lot of money wasted on something I can't use (not to mention time and energy).

I'm not against a new chair - I am just rather skeptical that it won't have the practical abilities I need to go about day to day activities. It could actually reduce my independence and inclusion.

I can't take them for a test drive because I can't sit in them without special seating - and by the time the seating goes in, I may test it and not get on with how it handles. It's a lots of faffing about when we havn't really tried different cushions in my current chair.

Why can't you try new cushions?

The answer is two fold. Firstly the NHS only contract with certain companies - with only a small percentage of cushion available on the market. We have tried a few and not had any luck. However, even with my new chair we will still have to find a cushion - so why not just try and put one in my current chair? Well, this is the second issue - my chair is a private, custome adapted chair and they can't easily alter the back rest. They feel that they need to alter the back rest and head rest etc to get me seated better on a cushion - they think it will help with reducing the pressure. I can see why they think this but interestingly, when we sat on the pressure mat that displayed the pressures on the computer, holding my back and legs in different positions didn't change the pressure! So the tech is saying it may not make a difference.

So what now?

They are visiting with two wheelchairs - a front and a rear wheel drive and seeing if they can be driven around my home (by someonen else if I can't sit up in them). Then I will choose either a front or rear wheel and go back to the clinic to try out seating. Who knows what will happen!

Tags:Nhs | disability | wheelchair

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.

Some people change on a bed, other's rock backwards and forwards as a method etc or shear their pants on with brute force (not good as it can injure you by friction burns and hurt your skin). There are 3 or 4 techniques - none of them that good to be honest for people with low to no muscle tone.

Most of them seem to involve pulling your clothes in all directions and in the past I've had rips and tears in them. So, for various health reasons I can't use these techniques and like many people with limited mobility, I joined the knicker free club years and years ago.

Disabled woman and mentruation.

However, there is a time of the month that you just can't do without underwear. You would never know that disabled woman menstruate - because it's still very taboo and easier to think it doesn't happen! Rain check.

Managing menstruation is one of those disability taboo subjects. Hoist manuals, Disability Living Fact Sheets, health care training etc. teach people how to manage transfers/use of a hoist to the toilet and general continence but I challenge you to find information about managing menstruation. It never gets a mention. That's why I'm talking about it (call me radicle lol).

Mensturation brings on a particular set of difficulties. I'm going to say it as it is - it's not like changing an incontinence pad where, in most circumstances, you are unlikely to pee or poop on the person as they change you or pull your pants on. For women who experiences a heavy cycle - you don't get that control. Also, sudden movements and changes in position (such as hoisting or other activity) can increases the chances of a sudden flow occuring. You don't want this happening as you are being wheeled around in a hoist sling with no underwear! You also don't have 5 minutes to slowly pull on your pants in a sitting position as you get in a mess. It's not dignified and it's inconvenient and might mean you have to start all over again with a clean pair. It is a HUGE problem!

Can't people just use tampons or the pill - or why not prevent periods through surgery?

I decided long ago I wouldn't use the pill everyday (actually not at all) - if you have poor circulation the risks for blood clots are high and medically it's not recommended as a long term solution if you have no movement like me. Yes there are medications to help reduce flow - but that's assuming you can swallow pills, want to take pills/treatments and understand they don't always 'stop' them.

Many woman, disabled or not, want better solutions - and of course I tried tampons, moon cups ... you name it. Nothing worked for me as I lost finger dexterity.

Surgery would likely kill me and even the newer treatments with local anaesthetics as a day patient aren't always successful (and with my wonky pelvis, wouldn't be an option!).

So - I'm stuck with it.

A cheap from of waxing?

Now, I decided that I needed a quick and easy way to get knickers on without shearing them underneath. During the first few days you simply can't take this long to put on a pair of pants!! Also, sanitary towels get crumpled, come unstuck and end up in the wrong place! Before you know it you've stuck your bits together and given yourself a quick and painful Brazillian!

That's the reality.

The home made solution.

So my husband and mother-in-law helped make these. A possible solution that has a waistband that attaches around the waist with 2 poppers, then you bring the gusset up underneath to attach at the front on the waistband (more poppers!). For more details see: Link to Knickers

Tags:disability | hoist | Menstruation

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.


What have we got in common?

Well, I read today that it takes an average of 13 yrs for a diagnosis of bipolar! That's quite amazing. Also that 85% of people got the wrong diagnosis such as depression.

Getting the right diagnosis of any health problem is critical to get the right treatments / therapy / support etc. We all know that. The label is also really important from a psychological and practical point of view.

It can be your ticket to filling in the box on application forms that require the full name of your illness of impairment to get everything from benefit support to a free cinema pass or VAT relief (and yes the latter two are beneficial to people with mental illness).

It also gives you and your friends something to Google to see what it is you've got to educate yourself and others!! It can link you into peer support and other support from specific charities. It can help people at work or in education understand you more and be supportive - and you can more easily get support like access to work and disabled student grants.

1) So our first thing in common, that we can chat about and identify with, are problems with not getting a quick (and correct) diagnosis.

I know some people with MD (that's what I have) who have waited many many years for a diagnosis. Some are still waiting. It makes life very difficult and can be a real worry. In the meantime your don't get the right treatment and can deteriorate or take medication that does more harm than good. I have other medical problems which gave me a wrong diagnosis resulting in years of pain, GP call outs, hospital admissions and wrong medication for what was eventually resolved by one surgery. They said the diagnosis should have been obvious… hmmm.

2) Little understanding from other health care professionals.

When my friends see a Dr other than a mental health specialist (who knows what bipolar is) they do not understand how bipolar impacts on other health conditions or getting treatment for them. I'm the same - my GP said they don't know anyone with MD, neither did my dentist, my gastroenterologist etc. etc. I have to tell them the health implications so they can figure out what the options might be and link it in with their specialist knowledge of the problem in question. It's all a bit hit and miss really. Mostly miss.

3) Difficulty in being understood by family.

I have family who refuse to accept the nature of my impairment or just don't understand how it affects me. This is common to people living with bipolar too.

4) Social services do not understand the nature of my impairment when it comes to 'needs'.

This is a BIG common debate I have with my friends who come within 'mental health services'. It can be a struggle to get the right amount of things like Personal Budgets / Direct Payments.

5) If you have a physical impairment related need for support and also a mental health need for support people only tend to focus on one and ignore the other.

People don't see the 'whole' of us! We are often classed under 'mental health' or 'physical impairment' services. The box doesn't stretch to having more than one thing for ticking purposes.

6) We both have had Access to Work and Disabled Student Allowance support - and all the ups and downs that comes with it!!

7) We both can't drive and have a Blue Badge.

Some of my friends also have a Blue Badge - just because you can physically walk doesn't mean you don't need closer or longer parking. If medication effects your weight, awareness of your surroundings, memory or you have anxiety - close parking can make a huge difference (although it can be a real struggle to get due to the application process). Many people even with physical impairments struggle to get a badge.

Many of my friends with bipolar were unable to drive or hold a licence and, like me had a PA driver or a friend to drive them. My University friend, in a manic state, would try and drive cars at 130 m.p.h so it was safer for him to be a passenger and have assisted driving or like my other friends who are on medication which means they can't drive. It was also safer for them to go quickly in and out of shops using close parking as there were more triggers walking past other shops. We could share the joys and woes of accessing shops - we are the different yet the same.

8) We are both entitled to getting Direct Payments (Social care support) if our needs meet the eligibility criteria where we live. This is cash given by the local authority we can spend on meeting our needs. We had all experienced similar difficulties getting these.

9) We can equally be harassed and victimised by other people, as disabled people.

10) We are both 'covered' by disability discrimination law / equality law.

11) We can both be turned down for jobs because of our impairments…. and are frequently.

We felt we were less likely to be employed and experience life on a low or benefit income. We shared the woes of being broke!

12) We all had university degrees - our impairments don't make us stupid but studying can be difficult as was getting good support.

13) We felt we were quite capable of having great, well paid jobs given half the chance and good support.

14) We had all experienced negative attitudes caused by media - and experienced some positive ones too.

15) We have had times in our lives when, to look at us, nobody would think we had any sort of impairment - it is hidden. It is hidden when we are on the phone or talking to friends on the computer - yet we migh still be 'ill'. It is comforting to know we understand this when talking to each other. It makes me feel good :-)

That brings about new sets of problems and experiences. Also, when you are really ill, people might not be able to tell unless they know you well. People don't understand when your abilities change overnight. People think you are being lazy and keep asking why you can't go out or be social.

Tags:Mental health | bipolar | impairment | disability

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.

Are charity events like this actually causing harm by the way they portray disabled children? Is it right to use pitying ‘pull at your heart strings’ pledge commercials? Certainly in the early days the life of a disabled child was shown as tragic, sorrowful and full of pain and sickness to get people to donate more money. (Think sad looking child with no hair, tube fed, cute dress, immobile against a background of slow, tear jerking music).

Then there is another angle. Think about a child who needs a wheelchair to get around or communication equipment - incredibly important for their development and overall independence. Yet many children are dependent, immobile or unable to have a voice because they can’t get the equipment.

Is Children in Need a way of using the kindness of people to support services and equipment that our underfunded NHS and social care services should be providing for EVERY child?

People won’t pay increased taxes so that more money can go into vital services - yet they give to charity so that a few lucky children might get support whilst the rest go without. I am not against supporting a charity - but that shouldn’t be the only way a child or family (or adult) can get support.

Read about a different perspective on Children in Need

Some disabled people will be campaigning today on Twitter and Facebook via the #CIN hashtag. Hear them out before you decide if you want to take part.

Here are some links to articles that relate to how disabled people feel about Children in Need and similar concepts.

• Transcript from Able Radio - Why hate Pudsey (2011)
• Confessions of a Pudsey Kid (2009) - hear from Crimson Crip about being one of those children in need and the media portrayal of disabled people.
• Guardian (2006) - Pudsey’s time is up
• Disability Now - Don’t just grin and bear it - a disabled activists perspective

How accepting charity has made me feel.

I was about 12 before I got my first electric wheelchair. Before then I sat in a bright blue adult pram that people pushed if I needed to move outside the house. It was un-comfy, humiliating and I had no control over where I went or where I was parked. An application for an electric wheelchair was made to the local Golf Club who had been raising money to buy wheelchairs for disabled children.

One night we were invited to attend an evening where we would be awarded these ‘gifts’ by a sports personality. We had to sit in our chairs and pose for the obligatory ‘ thank you for changing my life’ photo that would feature in the next charity fundraiser and appear on the club house wall of good deeds. I felt like some kind of dog in a parade as we were posed in different places, congratulated and smiled on probably by some mayor or councillor. It was exciting yet at the same time I appreciated how a monkey might feel being gawped at in a zoo. I didn’t care much for all the attention and felt a bit like a performing dog but with less tricks. I couldn’t even steer it straight. Still, I had to go through the ordeal to get a chair so I smiled and pretended to enjoy it.

I was hugely grateful for my first set of wheels - but not the way I had to go cap in hand and beg for it in the first place and go through the whole presentation thing.

No one asked us, the children in need, how we felt about this. We were just expected to smile a lot and travel round forever after promoting their golf course with the giant sticker they had welded onto the back of our chairs. We also had to put up with a golf ball for a joystick (yes a real ball with a hole in it [see picture] ). I felt used and abused as a piece of free advertising. I might have been young but I wasn’t stupid.

I wanted to hit the countless number of strangers who stopped me in the street to ask ‘oh is that a real golf ball?’.

I really hope things have moved on …

Tags:charity | children | disability

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.


Adapted instruments have been around for a while - and it is possible to play a range of instruments with as much as a blink. However, these are either costly or so specialised that they remain within charitable organisations or for members of organisations that specialise in this sort of tech.

Lots of people in a similar position to me are now able to play again on touch devices. My iPhone doubles up as a one man band - I have the Ocarina off course which I'm pretty good at in touch mode and a very good clarinet. Harp and guitar apps allow easy chord strumming and who can forget the good old cow bell and didgeridoo. I have around 15 instruments to play, with taking up no space and requiring no music room to store them! Also - at 59p to a couple of pound - it's a bargain.

My latest acquisition cost considerably more - an iPad. I think the Garage Band app is going to be my most used! So, within a few hours last night (after digging out some sheet music) I made this four track piece just wiggling my fingers!

First attempt:


Streets of London

I'm quite pleased with my first attempt. I've also found free sheet music so I'd better get practicing my Christmas repertoire - Jingle Bells it is ....

Tags:iPad | apple | Music | technology | disability | leisure | garage band | touch screen

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?

In fact, one of the things that shocked some social work students last month was my account of an experience, aged 11, when attending a village fete. I sat in my adult blue buggy / pram waiting to compete in an equestrian event. An old man shuffled over to me, leaned in close to my ear and whispered 'people like you should be dead'. I was shocked and upset. I told me parents and they said others had experienced the same thing.




Slight diversion...

I've followed the debates on assisted dying for many years and I've written a little about eugenics here. I've seen and heard the media portrayal of those who support assisted suicide or wish this for themselves on TV documentaries etc. There are many academic papers, journals and studies that delve into this complex issue. It also opens the wider debate on less obvious ways that people with impairments are prematurely sent to their death. For example, studies show that people with a learning difficulty or mental health problem endure unnecessary health problems (and in some cases dying) because they have not been offered health care advice or treatments that are routinely offered to the general population (2006: Link to article). I've experienced lack of screening because of inaccessible locations making it more likely that cancer would go undetected.

The well known experience and campaign of Baroness Jane Campbell DBE as highlighted in Not Dead Yet UK also reflects on how medical staff are quick to assume you would rather not be resuscitated or accept a treatment to prolong your life. You can view the latest Resistance campaign here which highlights disabled and terminally ill people's fears and actions to prohibit assisted suicide and euthanasia (the latter is where a physician actively ends a life as opposed to the individual doing it).

Back to assisted dying of the direct kind...

Across the debating forums there is a constant - the absence of, or lesser heard, voices and opinions of people who are in similar positions themselves, health wise, but desperate to live.

One fighting to die, another fighting for assistance to live.

I fall under the latter. Many of my friends and colleagues, including those in the health and social care profession fall under the former. It makes me very worried - will these people be fighting from my perspective should my health and social care fall into their hands? Will they pull out all the stops and help me fight and maintain the best quality of life I can get - or will their actions wreak of 'it's not worth it, she hasn't got long anyway' attitudes. Will my family or husband push for everything possible or just let me slip away 'for the best'. Who is this best for - me or them? Sometimes I really believe that the decisions of some doctors would be just like that. I mourn for the friends I might have made had their lives not ended prematurely because they weren't given the best possible health care or information on which to base treatment decisions when Doctors gave up on them too soon.

Give me the right to live first.

So it begs the question which I come back to time and time again - why does the media focus so much on those who fight to die when there lots of people who are trying to survive? People like me. Shouldn't our gut instincts be to fight for life and self preservation? We have enough knowledge of medicine and social care to make it possible to have a dignified natural death don't we? Is it perhaps that children can't wait for mother to do the right thing and die sooner rather than later so they will inherit a decent cash sum? Does this not ring alarm bells for people?

Are we so developed, as a society, that we think we have the right to control the timing of our death? Do we invest money in making life better for people, improving palliative care and support services at the end of life? No, not nearly enough? Of course there are many issues and often people who want to end their lives prematurely are facing what could be many years without the mental capacity or abilities they currently cherish.

When it comes to equality of course we have a huge difference. If you have full use of your limbs and are coordinated or strong enough you can generally decide to take your life in whichever way you choose, whenever you choose. It might not be morally right and it might not be legal - but it is possible. People have probably thought I was depressed or something the number of times I've accidentally nearly ended up under a car or over the side of a cliff! Seriously though, when I was in my teens I was always trying to think of ways to kill myself and even wobbled to a cupboard to hunt out some pills - only to find I couldn't get the lid off. Fail. It was the frustration of not having the right things around me like equipment, assistance at a time I needed it, and people who believed in my potential that drove me to despair. Thank God I had a good social worker who got me set up with the things I needed and made life good again.

If you have an impairment, there may be only one way to control the 'when and how' - through physician-assisted suicide. The closest I came to a device which enables you to voluntarily end your life by administering a lethal substance prepared by a medical professional was at the Science Museum (below). I actually felt physically sick. I felt it sucking the life out of me.



Euthanasia Machine', developed by Dr Philip Nitschke, 1995-1996, Darwin, Northern Territory, Australia.
Credits:Science Museum London
Educational resources

There is of course a big difference - Society still says killing yourself is wrong and not legal - except that in some countries disabled people are allowed to do what none-disabled people can't do because they have a terminal or incurable illness. However, a patient with a mental health problem who wishes to do the same would not be allowed and would be cared for in such a way as to try and prevent them dying.

Until we have done everything we can to ensure good quality health care, social care and equality and dignified living for people (including the attitudes of society about human value, worth and dignity) then I think all forms of suicide should remain unlawful. I will emphasise attitudes because no matter how dignified you make assistance with continence, say, - all that is undone if you overhear a nurse complaining about the smell on arrival or the inconvenience of having to change your clothes AGAIN; that is neither caring nor helpful. Attitude can make you feel good about yourself or it can be emotionally slice your heart into pieces.

It is easier to say the NHS is terrible, social care has no funding and society discriminates against me - so what is there to enjoy or look forward to? What is there to like about life? Well, I challenge this and even though sometimes I might be in pain - that's when I grow stronger in strength and spirit. Sometimes we have to fight or fight for others to have a good life. Sometimes we have to take action and make life better for ourselves. We need to have a strong voice to ensure those who have varying degrees of capacity are able to speak out and get the quality of life they deserve. When we arrive in the worst possible place - we underestimate our resilience, our ability to get through things and adapt. Sometimes the fear causes us to make hasty decisions before we get to that point and we are vulnerable in conforming to the dominant views of society.

I think that as the medical profession have the principles of the Hippocratic oath, so social workers and advocates should vow to also do no harm and fight along side people for a life worth living until it's natural end.

Links you may like surrounding comment to the documentary:

The BBC Programme on iPlayer

Christian Medical Comment - Twenty facts we did not learn. Same Difference - Personal thoughts from this great blogger BBC website - Sir Terry Pratchett comments post screening Paper reviews from Same Difference

My twitter feed - RT of film comments.

Tags:eugenics | euthanasia | disability | independent living | Dying | life | choosing to die

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.

Luckily, the ILF changed their ruling and disregarded earnings so I managed to scrape together local authority funding and Access to Work to have a PA during week days, an hour in the evening to go to bed and a few hours at the weekend.

Now a carer?

Over the years, the local authority and ILF cut back the amount and I found it impossible to find staff for the evening and weekends. We both knew the horrors of agencies and I really didn't want to use them. The stress of getting to know umpteen different people, not knowing if they were going to turn up or not - or at the right time etc. It was not an experience I wanted to repeat. Not to mention their rigid policies on moving and handling and tasks they could do. Also, they were more expensive then a PA and the funding long term just wasn't there, Because I worked in social care, I knew from many services users in my local area were choosing Direct Payments just to be free from inadequate care from agencies.

Gradually Kevin had to do the evening support as there was no response to PA advertising. When I stopped working full time (and lost Access to Work), I could only afford support from 8am to 6pm on weekdays anyway.

What about now? Become a carer yet?

Kevin, still working full time, headed off to work before my PA came so there was still time where I was on my own in bed. His work involved being on call which made it tricky as I might be on my own during the night with no one to turn me etc or during a week day for several hours at a time. The ILF had the attitude that it was just too complicated trying to build in assistance around on-call although we did try. Eventually, ILF withdrew the funding for 'on-call' time and we were left with no support options. Since then, Kevin has been assisting me for around 13 hours a day Mon-Fri compared to the local authorities' funded 10 hours. He is also helping me on a weekend with just about everything as I have little movement in my limbs.

Whilst we might, regardless of impairment, have been together at the weekends - it doesn't leave any space for Kevin to do something without me being present. He can't go anywhere and do his own thing, social, leisure or otherwise. If he wants to see his family, I have to go along. It's also not easy, which puts us off, because it involves makeshift ramps and trips out to a local supermarket or garage to use the toilet. At least with Direct Payments it meant my PA could be with me one Saturday so Kevin could go to a Kit Car show and spend some time having what we call 'a Kevin day'. One day a year isn't much of an achievement though for his quality of life in this past year.

Surely a carer now?

In the last few years I started getting a lot of pain at night and Kevin was made redundant. Rather then getting him up a few times in the night it became more lengthy support and more frequent - on one night virtually every hour. His days, and mine, were spent feeling more dead than alive. How do you look for work when you can barely put one foot in front of the other? We could see a solution but the NHS was very slow to help me. What should have taken two weeks to rectify took nearly six months on death's door and a enormous amount of stress.

During all this time, and over 10 care reviews, not a single mention was made about whether he wanted a carer's assessment and how it might help. Perhaps for the first 9 years he didn't see himself as a 'carer'. Perhaps whilst he was in his mid twenties, working full time he didn't identify with the image of a carer? We still identify the word with perhaps a young teenager helping out a parent or a person in their mid 50's assisting someone with dementia or impairments more associated with old age?

Also, with working full time, he was never present during my reviews to talk with someone about his needs. Whilst the local authority made a note that I was supported by a 'carer', this is totally different from having a conversation with the actual person and finding out their needs as an individual in their own right - their entitlement by law of course.

Carers aren't born - they are made?

Thankfully, Kevin has a new job that doesn't involve on call. However, it does mean that he has to get me up before he goes to work because I don't want to be left, unable to move in bed on my ventilator with nobody around - indeed if something went wrong I would die. So, we have had to adapt and muddle through. It means getting earlier nights to fit in enough hours of sleep. It means he has less time in the evenings to relax and chat with friends on the net for example. From day to day and night to night - nothing is ever the same or predictable. We can't say for sure how we will feel the next day - it depends what the night brings. People don't understand why we answer 'maybe' to invites out. We are not disinterested - we simply don't know whether we will feel up to it.

A carer identity finally?

So is Kevin a carer or just a caring husband? Perhaps that is up to him to decide.
Statistically our census return said yes and we realise that is the label to use when talking health and social care or looking for information. Do carer's only come into existence at times when paid support isn't available, funded or of suitable quality? Is it a social construction? One that changes rather than being a seen as a permanent label - a stain or blight on one's potential?

For me, the word will always sound too fussy, to paternalistic. I like to think that I do as much as I can and then have that extra assistance to reach the goal. For me it's all about attitude and being caring - and only my husband can do things in such a caring and loving way. Even when my PA who might do the same practically - it's just not the same. That extra understanding, instinct, that extra attention, a gentler touch and a bit of telepathy!! Only my husband would understand that a screwed up nose and a half wink means move me a few inches backwards as I have pain in my hip!
There is no substitute for that. He does it out of love - and money can't buy that. In fact, to pay him as a 'PA' and take him out of his current work would destroy so many things that another workplace can provide - time apart, meeting new people and his skill contribution to the work force. Not to mention the chance of an income better than any Direct Payment or carer's allowance might provide.

Maybe things will change this time next week and we will gain a new perspective.... but for now. This is our reality.

Tags: carers | carer | disability | Daily living | independent living

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

Tags:travel | tourism | train | railway | steam | access | disability

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.

Tags:attitudes | catholic | disabled | disability

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.




Cabins.

Again, we pre booked a cabin with wheelchair access. We had our tickets printed at the car booth which they told us also acts as your room key. This was the same as our first journey.

On locating the cabin (which had us wandering the isles of cabins to work out the number system) we found the door had a small low touch pad with a slot to insert the room key card. It also had a normal handle on the door. I believe the door was supposed to open automatically. I say supposed, because it didn't work.

My husband tried several times and the light flashed but nothing opened. Eventually a member of staff said we had to have a normal key to put in the door. What use is that! The automated door was not working and when we got in we could see why - the opening door arm was not fitted but the electronics were there.

On entering you can see the cabin above (the lighting made the picture a bit orange). The bathroom featured a level entry (roll in) shower area with seat and lots of grab rails. The toilet had two grab rails either side and room to side transfer to one side. I'm not that fat but due to scoliosis, lean to the right side. When the grab rails come down they basically wedged me onto the toilet and are closer than what you would find in your average UK accessible toilet. The floor surface is very soft, with good grip but like the previous ferry, the sink is not suitable for hair washing and difficult to reach for me personally.

The bathroom is rather nice but the flat push panel to open the bathroom automatic door is situated above the side unit of the bed on the left of the cabin. So if you have to sleep on the right bed (which I do because of my spine) you can't press the button from bed. However, if you are a wheelchair user, how someone could sit on the bed, press the button, transfer into their chair and then get through the door before it closed again in about 10 seconds is beyond me anyway! The bathroom door swings back and because it is wide, there is only a few set places your wheelchair can go or it hits you and closes again. If you are standing in the way of the door the force would knock you off your feet - my wheelchair would rock with the force and it's a weighty machine. The location of the switch hasn't really been thought through in the overall design I felt and the close mechanism is rather violent (but possibly needed to close a large heavy door).

The cabins were nice though putting these problems to the side even if they did vibrate something chronic.

Customer service.

I was a bit miffed that the free wifi was only for 3 hours and the 'reception all over the boat' meant one bar if you're lucky. We also got an incredibly poor service when purchasing food as what we wanted from the menu wasn't actually available and my husband ended up with a microwave meal and I ended up with a chicken burger that makes McDonalds look like a 5 star restaurant. The guy who 'cooked' our meal was more interested in the football on the plasma tv installed in the food court than customer service. We had no offer of help to carry the tray and no 'quiet area' as in my previous blog. Too much money spent on umpteen plasma screen tvs and bars than on customer care I think.

Tags:Netherlands | holland | disabled | holiday | disability | wheelchair | access | ferry | harwich

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.

Stena Line - to Hook of Holland on board Britannica (older ferry).

This slightly older ship was refurbished in 2007 and was fantastic.

We selected a disabled cabin for one person as a space to chill out and appeared to be the only wheelchair user on the boat getting a large disabled cabin with tables for 1-2 disabled people.
You can see a 360 of that cabin (with roll in shower) on their web-site here.


The only difficulty was the sink is quite high and basin is inset a way from the edge as opposed to the usual type of sinks in say a Premier Inn. It was airy, clean and the beds were firm with a soft mattress topper which even I found comfy having scoliosis.



On board we had free wifi for the duration available on the decks which suited me and my iPhone!

Top Class Service

We were met just outside the lifts by a steward who said they had a reserved area for wheelchair users on board away from the crowds of people and closely packed tables. So, just to the side of everyone else were 3 tables by a window, with a rope barrier and larger access space clearly signed 'reserved for our wheelchair accessible guests' which made me giggle as perhaps the intention got lost in translation now everything was Dutch/English bilingual. Either way, our steward said just to ask if anyone took our spot and he would 'hoof them out'. Sounds good. Not a single person or child tripped over us in our lovely corner and it was away from the hustle and bustle which was lovely. Some people might see it as segregation but there are times and situations you really need your own spot - not just wheelchair users but other people with impairments too. Our steward watched out spot as we went to get some lunch, went to get our cutlery whist my husband carried the tray and basically got us anything we needed. We felt like royalty,

Our meal was lovely and the journey didn't last long at all. Right from pulling up in the car, to boarding near the lift through our journey and off the other side it was very good. The ship was clean and tidy and not many people onboard in general. 10/10.

Tags:Netherlands | holland | disabled | holiday | disability | wheelchair | access | ferry | Premier Inn | harwich

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.

Between my mum helping (pushing, pulling etc) and my wobbly legs, we made it. I was shattered and it took all my strength. It was also a dangerous thing to do because I could have collapsed and tumbled down at any point.

I got to the top, I remember a few questions about how far I could walk - 1 football pitch, half .... and they basically said if you can walk up a flight of steps you must be fine. Failed.

So I had to appeal. This time I went in my leg splints. I obviously did not look disabled enough. I also entered the surgery in my 'buggy' aka adult pram as they were in those days. Mum lifted me out in front of them and I sat on a chair. I can remember what it looked like, how it felt, the colour and feel of the cold wooden desk I clung onto so I didn't fall flat on my face before I sat on the chair. I can see it all now like a nightmare.

I was told to stand up by the doctor/assessor. I moved my legs a bit and said I couldn't. It was the truth.

He said I wasn't trying hard enough and shouted at me ... PUSH, try harder.

I wanted to cry. I held back the tears, they received a large pay cheque for drilling me.

I passed the test. I was awarded it for life eventually. I hope to God the next medical is not like that. A list of endless questions about what you can't do - just like every social care assessment and review is. Some things never change?

Tags:DLA | benefit | disability | disabled | budget

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.


February 5th 2010 - The day it all started.

On Friday the 5th of February, 2010, I entered Waterstones to purchase a travel book at 19 Earl Street. I was accompanied by my personal assistant (PA/carer). The travel section was located on a split level with stair access. On asking a member of staff at the till how I could get up to that level, she directed me to 'the accessible entrance' around the outside of the building. [The building is on a slight hill].

On leaving the store I located the second entrance which had a large step [left]. I have Muscular Dystrophy and use an electric wheelchair due to limited limb movement. As such, I was unable to access this level. I sent my PA back into the shop to ask about a ramp for this step but she came back and told me there was no ramp.

On re-entering the store I spoke to the same member of staff who said that "other people manage".

How I felt


I was made to feel an inconvenience and bothersome customer which caused me great distress. I was also uncomfortable about having to express my frustration in-between the staff member serving other people. No attempt was made to find out if staff could have helped (e.g. locating a book from that level for me etc). I said I had rights under the Disability Discrimination Act and wanted to speak with the manager. She replied that she didn't know anything about the DDA and that there was no one I could speak to. I repeated that I wanted to see someone and she said there was no ramp because of the building being listed.

I felt she was not listening to me and treating me with the respect that other customers would receive. I was then told the manager was in and on an upper floor. Feeling deceived and insulted I went upstairs and a helpful member of staff called to see where the manager was (in another branch) and offered me his e-mail address.

February 9th 2010 - Next steps.

I phoned the Equality and Human Rights Commission (EHRC) and a very helpful person went through the questions to see if I had a case for discrimination. Once he knew that I met the requirements (i.e. was disabled by the definition of the DDA) he gave me my case number and advice to start down the route that is usual. This meant clearly explaining what had happened to the manager and seeking a response to a template list of questions provided by the EHRC within 14 days, recorded delivery.

February 13th 2010

My letter was confirmed to have been received by the assistant manager who said that he had passed my letter to their DDA expert which should enable a portable ramp.

February 18th 2010

The manager confirms sight of my letter and writes to me. [Click here to see letter 1]

Step 2 - Raise it up a notch

The letter, I felt, did not answer the questions so I politely thanked them for responding and said that I look forward to finding out the further details on the type of disability equality training staff received, whether it is reviewed for effectiveness etc. I suspected it was just a passing mention on a generic equality course which is why staff were unable to offer me an appropriate service. I wanted to find out more including what the results of their last DDA review were and why this had not identified the possibilities of a ramp. I explained I wanted to be confident that this would not happen to another customer.

April 8th 2010 - no further response so I moved to official proceedings.

I phoned the EHRC and they sent me the paper work for the next step.

April 9th - I served documents to Waterstones 'Questions Procedure'

Using the Questions Procedure can help a disabled person:

• decide whether or not to bring legal proceedings in the county court in England and Wales, or sheriff court in Scotland; and 

• present his or her complaint to the court in the most effective way.

A question in a questionnaire and any reply by a defendant is admissible in evidence in court if the claimant’s questionnaire is ‘served on’ (sent to) the defendant.

April 15th

I receive a letter from the manager. He said

"Waterstones as a company has undertaken a  full survey of all of its branches to ascertain how they meet the needs of its disabled customers. It has a list of work to be done, with those branches with the most shopfloor space that is inaccessible at the top of the list. The Earl Street Branch in Maidstone is some way down the list, with approximately 10% of space inaccessible. Waterstones as a Company is committed to acting on as soon as possible as many of these issues as it can,  given the current financial situation of the Company
 
We have decided as a Branch not to wait, and to act straight away to change the situation.Your experience has prompted us to review the use of the back of our Ground Floor as a sales area. As a result of this review we have decided no longer to use this as a shopfloor area and to close it off, relocating those sections to other more accessible parts of the Branch. We are looking to do this work in June 2010."

This very cleverly dodged the key question in the papers that were served where they can declare that they did indeed act unlawfully (or they can say they didn't and explain why it was lawful).

I didn't really want to go to court - I just wanted them to hold their hands up and say 'what we did was unlawful, discriminatory and we apologise'. I hadn't had this part of my question answered.

April 26th - Seeking the answers to the papers that were served.

I e-mailed to remind them they had not answered the specific question form the questionnaire. Did they agree they had failed to make reasonable adjustment and provided a service in a worse manner because I was a disabled person? Had they failed to train their staff adequately?

I started making enquiries about legal action - it could cost me over £1000 to get a judge to make them respond and it didn't look hopeful I would be entitled to legal aid type support.

June 4th 2010 - I received an e-mail to say their response was in the post - the papers came back, completed, on the day of the 8 week response deadline.

They agreed with my statement of what happened and how they discriminated against me by failing in a range of different ways. I had what I wanted and the alterations to the building were due to start a few weeks ago.

So, sword or poking stick.... well, it got a result but I can't go through that every time I am discriminated against just to get someone to change. No disabled person wants to relive the distress and hurt that it causes for the duration of a complaint that could last months or even years.

There are still thousands of stores, of all kinds, who won't make reasonable adjustments until they receive a complaint. Even things which are relatively cheap and quick to action - like the portable ramp and a friendly member of staff who had been trained in disability equality AND the DDA. Training is not just a few hours on 'how to communicate' and a top ten crib sheet about dealing with customers who have impairments (which is what this member of staff got). Attitude is a huge thing and just good old customer service! Smiles are free for example.

So all in all - it gave them a poke but it is not the mighty sword that will get Waterstones thinking about all their other stores on a 'waiting list' for action.

I certainly will never shop there again and I will share my story with others so they can decide where they buy their next book from.

Tags:attitudes | business | DDA | disability | discrimination | respect | waterstones | books

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:

A Shower Locking Foot Rest with suction cup. It is basically a foot print sized contoured foot rest that can be stuck on a shower wall. So if you need to rest your feet on a ledge to shave, wash or do whatever it becomes easier with this little gadget (assuming you don't lean too heavy, slip and kill yourself in the shower that is).

So onto the price:

Amazon appears to sell it as a 'Safe-er-Grip' with a slight disability angle on the marketing for £12.99.

bekinky.co.uk are selling it at £9.18 as an aid to having sex in the shower (and packed as such) Other sex shops sell it up to £13.45 according to Shopwiki.

So the moral of the tale is - try a sex shop or two for a bargain on useful disability gadgets and watch your PAs face as they open it for you!

Tags:disability | equipment | shower | gadgets | sexual intimacy

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. The suit said she landed on her bum, causing her to suffer “multiple spine injuries, including the need for multiple neurosurgical spine surgeries.”

It made me recall the time when I was at work in Ashford and assured my meeting room had 1 accessible loo. On arrival I saw a sign 'out of order' I enquired and was dismayed at having to stay there for many hours with no loo to use!

A maintenance guy came back and said oh don't worry, it's just that the seat wobbles as it is broke (giving me a demo of a very wobbly seat that was totally unsafe). Considering I have no balance at the best of times I resigned myself to the fact that I would have to cross my legs. He then said something like 'it's not that far to fall anyway... I'm sure it will be ok'. Eh hmmm. Guess I'll be wetting myself then...

Tags:access | toilet | disability

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.
--

Talking about gadgets, the best invention in my bathroom has to be the vertical toilet riser.

Now you see, for all us none mobile sorts the biggest cause of incontinence is inaccessible toilets. This is a complete bug bear because the amount of thought that goes into designing accessible toilets is equivalent to the intellectual capacity of a goldfish.

Then if you can get into the room - there is the question - can I get on and off. Anyway, at home we have specifically designed our bathroom around easy access for me personally, visual appearance and use of gadgetry to make life easier.

In the beginning...

This was our layout to start with.

1) I need to transfer to my left so the toilet is the wrong way round.
2) Not enough room for hubby/PA to lift and transfer.
3) I need quite a low toilet - lower then normal. However it is really hard to lift me up from a low surface - so some gadgetry is needed.
4) Sink not correct height, shape etc and no room at the side for PA/hubby to wash/dress me.
5) Flooring needed to have enough grip so PAs and myself don’t slip when transferring, but not
so grippy that I can’t slide my feet across the floor to transfer.
6) Door needs to move for access.

Our own design.

Then we have transformed and rebuilt it to a 'wet room' which will have a second door leading to the bedroom if we later install a ceiling hoist. (large brown door on right side).


New features:

1) level entry shower i.e. now a wet room.
2) Door now in middle of the room (where it was originally as the owner had wall papered over the door!
3) Huge space (including shower area) on the floor to move around.
4) Chose a sink that is free standing with nothing underneath for lots of leg room, a big space to wash my hair in the sink (in reach of shower head) and room for someone to stand at the side to wash my hair.
5) A ledge behind the sink for a foot stool - so I can balance.
6) And a unique toilet (see below) with a round, bevelled seat (essential for posture and balance). It’s from Denmark (land of fabby toilets) and features rise and fall (and looks like the Starship Enterprise.

More to follow in future days.

Tags:disability | access | equipment | Daily living | toilet

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.

It used to be the 'try it and see' for health and social care staff and of course 'we' the great public. - Everything from accessible kitchens and bathroom equipment to the latest in colostomy bags and leisure things (my favourite being the wheelchair accessible roundabout and swing for children - I wish they had them for big kids as well!!).

Some things you thought - never in a million years will disabled people want one of them in their homes because it looks horrible, uncomfortable and only comes in 'medical green' as a colour option .... only to overheard an OT place an order for 500. Do they ever learn... no I think NOT.

I happened to be browsing the list of exhibitors last nights and the latest inventions that are up for 'an award'. Oh how things have changed over the years.

Fantastic NEW products include....... The Great John. Of course this can only be one thing - a reinforced toilet for obese people which boasts a 200% larger seat and - you guessed it is an American invention. A new commode and large wheelchair ... for Bariatric patients (obese people)... and so on. Can you see a theme here.

The UK is now benefitting from more disabled people (to balance the demise of our people due to genetic testing LOL) and of course there needs to be appropriate adjustment in the equipment field.

Also in the past years there has been a rise in the number of stands devoted to discrimination (yes the DRC are there) and organisations of disabled people - now we are getting somewhere - life isn't always about trying to 'fix us' in some way with a bit of equipment.

What does make me angry - the cost of these 'liberating' gizmos.... see my other posts.

Tags:equipment | disability | gadgets

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?

Tags:disabled | disability | hospital | Nhs | kent | treatment | access | disability equality