A Trip to Suffolk

A Trip to Suffolk

I’ve just got back from a couple of nights away at a lovely cottage in Mildenhall, Suffolk nearby Thetford, called The Walnuts.

The Walnuts
Over the last few years, the distance I can drive, even as a passenger has reduced (see the post Cars Vs Sleeping). It’s usually about an hour as the maximum. However, I also find that it’s very rare for me to be in a car for longer than five minutes, without falling asleep!

I don’t usually go away for long, as my cats get stressed in the cattery, so if I do get a chance to go away, it’s as close to home as possible. It’s a shame as I’ve love to see more of the country, but there are some beautiful places nearby so I’m lucky.

One way I’ve found to slightly increase the distance I can travel is to recline the seat right back, and cover it in pillows. I’m usually asleep before we get on the motorway, and only wake up when we arrive! It helps reduce the pressure on my spine, so I’m not such a mess when I get there.

The Walnuts had a Groupon offer, which I sadly just missed, but when I phoned to book the owner was kind enough to honour it. The deal included a BBQ pack, but there are other options if this doesn’t appeal to you.

In terms of accessibility, there are a number of cottages on site, and all except one have the bedroom/s upstairs. The one that didn’t is called ‘Inglenooks’ and has everything downstairs, so that’s the one I stayed in. One of the good things for me about going away for just two nights, is the battery in my wheelchair lasts that long, so I can leave it in the car.  That I don’t have to worry about getting it in the cottage.  There is parking directly outside the cottage, which is handy if you can’t walk far.

Walnuts Cottage

The cottage wouldn’t be suitable for a full-time wheelchair user, as it doesn’t have level access. Each room has a raised threshold (not a step, but more than enough to stop a chair.) There is enough space for a manual wheelchair to be folded up, or stored in the bedroom, or living room – so if you don’t need to use it all the time, but want it keep it with you that’s an option. The biggest step is the one leading into the private garden. There is no bath, just a shower, and there is a small step into it.

The threshold into the bathroom

The threshold into the bathroom

The larger step into the garden

The larger step into the garden

We received a warm welcome when we arrived for one of the owners, and he showed us how everything works including the private hot tub. It was quite chilly when we arrived, as the weather had suddenly turned cold, and so he lit the open fire in the bedroom.

The fire lit

The fire lit

My first impressions were very good. The living room contained a sofa and a table and chairs. The flat screen TV was placed on a lovely book-style table, that opened to find a selection of DVDs and menus. The lamp was quirky and made out of a stack of tea-cups.

Aren't these nice!  Two books, with the top one containing two drawers

 

lamp

 

The bedroom holds a queen size four poster bed, and another flat-screen TV on the wall. There are nice little touches like fresh flowers on the dresser, and chocolates on the bed. There is a sofa and arm chair next to the open fire, and a book shelf with a small range of books – and it was lovely to sit next to the fire and read.

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In the bathroom they had provided towels, robes, shampoo/conditioner, body moisturiser and body wash.

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Waiting in the kitchen was a large breakfast hamper containing bread, jams, marmalades and honey. A range of cereals and porridge, salt and black pepper, fruit, tea/coffees and cookies. In the fridge juice, milk, beer, wine, butter, yoghurts and bottles of water. In addition was the BBQ pack, which included a range of meat, portable BBQ, marshmallows and sticks! There is also free wifi, and each TV can play DVDs.

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Also in the garden along with the hot tub is a place to sit, and a real BBQ, but our attempt to light it failed!

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One of the owners also provides treatments – including relaxing massages, beauty treatments or full-packages, although the room for this is up a steep flight of stairs. She did manage to provide a downstairs room for my treatments, so definitely mention this when you book.

The only negative for me was that the sofa was pretty uncomfortable, which made it hard to relax. Most people I’d imagine would use their cottage as a base to sight-see, but the weather kept us in a lot, and so this was a pain for me. (Quite literally!)

All in all, a lovely stay, and I’d love to come again in the summer months when the garden could be made full use of.

 

Have you had any nice trips away this year?  Tell me about them in the comments below!

 

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Three Innovative Solutions to Accessibility Problems

A Wheelchair Hoist with a Difference

This amazing hoist is perfect for full-time wheelchair users, but also part-time users who find it difficult to stand at the back of the car to operate the hoist (which can be pretty slow).  The only problem is the huge weight difference between a manual chair and an electric.  I would imagine a hoist like this would struggle with an electric chair, but hopefully this will be the future.  It would also allow smaller cars to be used, when people don’t want to drive vans in order to transport their chair.

A Hidden Lift

How many times do you find the ramp or lift into a building is tucked around the back of a building?  Or it’s resented for spoiling the aesthetics of a building?   Think of all the historical locations that have no access at all.  This is the perfect solution – the look of the building can be kept and the ramp can be located in the most convenient location.  It looks like in this video a second person is needed to operate it, so as long as that could be resolved, this is ideal.

Converting a Manual Chair into a Scooter

These have been around for awhile, but it’s nice seeing a video of one, and how easy it is to use.  A lot of people use manual chairs, but may struggle on longer distances, rougher terrains or hills.  This looks like it could be kept in the back of the car to be used when needed, and looks really fun too!

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Which is your favourite innovative accessibility solution?  What do you hope they’ll invent one day?

11 Tips for Learning to Drive with a Disability

11 Tips for Learning to Drive with a Disability

I found learning to drive really difficult.  I had lessons over two years, and I don’t even want to begin to work out the cost of that.  Neither of my parents had a car, and so my lessons were my only chance to practise.

I found it hard to coordinate everything due to my then undiagnosed Ehlers-Danlos Syndrome, and had awful muscle pain from using them in a different way.  I could never have more than an hour lesson as my ankle and foot would go dead, and I found it all very exhausting.   In addition, I was also very nervous/anxious, and just thinking about my test caused me to shake like a leaf, which then made me make loads of stupid mistakes.

But my worst mistake was my choice of instructor.  I picked a lady who stated she specialised with nervous drivers – but this couldn’t be more wrong.  Her style of teaching was to keep quiet while I drove, but then ask me to pull over and ask “Where do you think you went wrong on the roundabout five minutes ago?”  When I didn’t know/couldn’t remember she’d get cross.  She spent all the lesson pointing out my mistakes, with the atmosphere getting more fraught.

As time went on, I found instead of growing in confidence I became totally convinced I would never pass.  It felt too awkward to ‘fire’ her, so I continued with this situation for far too long, ending numerous lessons in tears.

I then went to university, which gave me an opportunity to get a new instructor.  He was completely different – calm, more positive and quickly my confidence began to increase.   I decided that before I took my test I wanted some more intensive lessons – more than the one a week I was having, but my packed university schedule meant that was impossible.  So I spent my Easter break having lessons every day for two weeks, with a test at the end.

I failed.

However, it wasn’t the total disaster I thought it would be.  I got a major for hesitation because on the way back to the test centre a bus stopped in the middle of the road.  I couldn’t see around it, and being quite a busy road I thought I’d be likely to meet on-coming traffic if I went ahead.  We waited about thirty seconds, and then continued – but I apparently should have gone.  I think it was a little harsh, but there you go.

My second test was back in my university town.  I was a hundred times more terrified.  My legs were shaking so hard I kept stalling, and I made silly mistakes.  At one point I tried to start the car three times in a row, and it kept stalling.  I couldn’t understand why, until I realised I hadn’t put it into gear.

As we pulled up back at the test centre, my instructor who was waiting outside looked over to see how I’d done.  I shook my head.  I’d been a mess.  My test examiner asked what I’d just said to him, and I said I didn’t think I had any chance of passing.  She responded, “Well I disagree.”  She then handed me the pass certificate.

I can’t even begin to explain how I felt.  I know everyone feels joy at passing their test, but I had convinced myself so thoroughly I would never ever pass, and it had taken so long, and being able to drive was completely life changing.  I think it does take on an added meaning when you have mobility problems.

At that point my mobility was going downhill rapidly, and I was struggling to get around the university, and also the long trip home on the train (through London on the tube).  But overnight my world opened up – I could get to the shops, see friends, and go home whenever I wanted.

That was almost six years ago.  I was lucky I took my test before my condition got like it is now – I’d really stuggle with the lessons, but there is lots of help available to help people with disabilities.

Here are some tips I learned in the process to help you pass when you have a disability:

  1. You need to be comfortable with your driving instructor.  Even if they’re nice, or you’re scared of hurting their feelings – it’s your money, your time and it needs to be right.
  2. Make sure they fit your learning style.  I tend to do a lot better when someone tells me what I did right, instead of making me feel bad by making a big deal out of everything that went wrong. Either explain that to them and hope they’ll adjust to your learning style, or move on if they don’t.
  3. Explain your health issues to them.  They can make adjustments – such as trying to make the seat more comfortable, mixing in practical parts of the lesson so you get a break, or pointing the direction they want you go as well as saying right/left if you have any processing issues.
  4. Your instructor can request you assessor points the direction they wish you to go in your test as well as saying left/right if you have dyslexia or processing issues.
  5. If you can provide supporting evidence, you can request additional time while taking your Theory Test or Practical.  Make sure to explain any physical issues to your examiner so they’re aware if you struggle to turn, or whatever the issue is.  You can also ask for a disability specialist assessor, who should have had additional training in this area.
  6. Make sure you detail all your needs when booking either your practical or your theory.  The last thing you want when you’ve just arrived at the centre when you’re so nervous you can’t think straight is to start having to point out things that aren’t accessible to you.  And if you’ve already told them, you’ve covered yourself and it isn’t your problem – it’s theirs.
  7. If you can’t make it to the test centre for your Theory Test (for example it’s not accessible to you) it’s sometimes possible to take your theory test at your home.
  8. There are specialist instructors/cars out there if you need an adapted car, or someone used to working with people with disabilities.  Ask for recommendations, or ask bigger driving schools if they have an adapted car on their fleet.
  9. If you receive High Rate Mobility Disability Living Allowance or the Mobility Component of Personal Independence Payment you can apply for your provisional driving licence at the age of 16, instead of the normal 17, which is really helpful.
  10. Motability and other charities sometimes offer assistance towards learning to drive when you have a disability.  If you’re working then it’s also worth approaching Access to Work if driving would enable you to remain in work, or make life easier for assistance with lessons.
  11. If you need help to find the right adapted car for you, places like the Forum of Mobility Centres or the Queen Elizabeth’s Foundation for Disabled People can help.

Remember it may take you longer than someone else, but you will get there in the end.

Also check out this great post by Disabled In Scotland who details adaptations that can be made in the car, and the different route he took to find the right instructor for him.  There are also some great tips here for deaf drivers.

Do you have any tips to share that helped you?  Did you find it a struggle to pass your test, or was it a breeze?

http://www.dreamstime.com/stock-photography-teen-holding-driving-licence-plates-car-image22394822

The Difficult Decision to Get a Wheelchair

The Difficult Decision to Get a Wheelchair

This article was first published in the December issue of Living Well with Fibromyalgia

In the next year some of you may be pondering the decision of whether or not to use a wheelchair, if you’re finding walking painful or exhausting.

It’s an incredibly difficult decision, and there are often a few reasons why this hesitation happens.  For some it can feel like giving in, that’s you’ve stopped fighting.  It can sometimes feel like you’re sacrificing your mobility – that if you have a wheelchair you won’t push yourself walk at all anymore.  There can be a stereotype that wheelchairs are for people who cannot walk at all, or just for older people.  It can feel embarrassing, or like you’re making a big deal out of your situation.  There are lots of valid (and some not so valid) reasons that can make that step a hard one.

The main suggestion I put to people wrestling with this decision is – are you avoiding going to places because you struggle to walk around?  Have you stopped going out for a walk with your family, going on a shopping trip or not even considering an evening out with friends?

That’s the position I found myself in a few years ago.  I was simply avoiding those activities because walking was so painful.  One day someone offered to push me around a supermarket in a manual wheelchair they had available for customers.  I hesitated – they were for people with disabilities!  Eventually I gave it a go, and the difference it made was incredible.   I could spend time looking at what I wanted, browsing through the aisles – something I hadn’t been able to do for a long time.  My attitude changed, and I began visiting shops or places I knew had wheelchairs or scooters for customer use.  (I also accepted I was one of those people with disabilities during this time.)

I did find being pushed in a manual wheelchair very odd though, but it was my only choice as I’m unable to self-propel.  It feels like you’re giving all of your independence over to the person pushing you, and it’s hard to explain what this feels like – as an adult who has been making their own decisions for years.  That person has the power to decide where you go and what you will do, and you have to trust them implicitly.  It’s also a physically exhausting job for them.  There are lots hazards you don’t really consider when walking such as hills, pot holes and curbs, plus generally poor accessibility like having no ramps, tight turns, advertising boards on the pavements and other street furniture. The strain it put on the person pushing made me feel very guilty.

The cost of a wheelchair or scooter can also be difficult to afford.  I was provided a manual wheelchair on the NHS, but as I couldn’t use it independently and didn’t have anyone to push me around 24/7, it mostly sat gathering dust.  The decision for upgrading the manual was taken out of my hands by damage to my spine that means I can now only walk very short distances.  As I was working at the time I was able to apply for grant funding for an electric wheelchair and a hoist for my car that was available to help disabled people in employment.  Other options include schemes to lend a chair or scooter for a short period of time, charitable grants or medical insurance that may help towards a purchase.  A decent wheelchair will be costly, but it’s also worth considering buying second-hand through private sellers or online outlets.

However, getting a wheelchair changed my world overnight.  I’ve been able to go on family outings, visit local parks and enjoy trips out to local shops.  It means I can save my energy and pain levels from increasing through walking and use them on enjoying myself instead.  I still sometimes feel awkward around family and people I haven’t seen in awhile – but if they can’t accept your need to get around without agonising pain – that’s their problem.

So if you’re sitting at home still trying to make that decision and thinking of the negatives – try to think of all the positive things you could do that you haven’t been able to do in some time if you’ve struggled with walking.  A wheelchair could  open more of the world to you.

My wheelchair - an Invacare TDX

My wheelchair – an Invacare TDX

Justice for disabled people vanished overnight, but not many people noticed

Justice for disabled people vanished overnight, but not many people noticed

In April this year the law around ‘no win, no fee’ arrangements changed due to lobbying from the insurance industry around the so-called compensation culture.  This has massively backfired onto the most vulnerable of society, and has made enforcing the Equality Act 2010 incredibly difficult.  I wrote about this issue in August, but since then have heard almost nothing more about this problem.  This is one of those subjects that should be making headlines, causing protests and marches, but instead the response has been limited.

Just to summarise: If a person with a disability wanted to bring a legal case against someone – for example a bank, for refusing to provide a ramp, or a university for failing to adhere to a request to provide course materials in braille for a blind student, they could have entered into a no win, no fee agreement with a specialist law firm.  These agreements are backed with an insurance policy, and would mean if the case was lost, the insurance company would protect them from any fees, and if they won – all the costs were met by the losing side.  However, the change to the law has meant even if the case is won, they cannot claim the costs of the insurance premium back.

It may be thought that it’s completely reasonable to pay the costs out of any compensation received – but damage payouts tend to be pretty low.   In fact – most of the time it will mean having to pay out much more than any compensation amount they could ever hope to receive.

This means the following:

  • Legal proceedings will be reserved for only the richest in society.
  • Shops and service providers will be able to ignore the law, as no one will be able to afford to bring a case against them.
  • It has vastly reduced the power of the Equality Act overnight.
  • Legal cases bring change that help shape society to be accessible to people with disabilities. 

Today Unity Law has launched the Equal Justice Report, which you can read here.  Please do read it to find out the specifics of what needs changing, and the impact it will have.   Here are two simple ways you can help:

  • Write to your MP.  Unity has provided a template letter within the report, but I have found not all MPs respond well to a template letter – so write how it may impact you or your loved ones.
  • Create a buzz on social media – share the report on every platform you can, and tweet using the hashtag #equaljustice

People need to realise the impact this will have, and that will only happen if we all pull together to fight back against this terrible change in the law.

Credit to Mconnors

Credit to Mconnors

A new rule on public transportation – wheelchairs first!

A new rule on public transportation – wheelchairs first!

How many times have you heard a story of a wheelchair user being refused access to a bus, and left waiting in the cold, snow or rain?  It happens all the time.

 

I’ve heard reports of wheelchair users being left stranded for hours, being told they can’t get on the last bus of the night and even of one driver telling the other passengers that if they allowed an electric wheelchair onboard then it might blow up.

 

Despite these many cases, the bus companies often seem indifferent.  I’ve had quite a bit of experience of this myself as chair of an Access Group – over the years I’ve had numerous complaints from members about local buses, and the letters back from the bus companies always follow the same formula.  An apology, and a promise that drivers are trained in disability awareness.  When we’re tried to follow up on this – and ask whether we could perhaps run a training session, or even just see the materials that they’re being trained on, but we’ve been met with radio silence.

 

I was very interested to see that Unity Law, a disability specialist firm based in Sheffield had taken on the case of Doug Paulley, a wheelchair user who was unable to get on a First Bus when one of their drivers wouldn’t make a parent with a pushchair move out of the space.  Having contacted them in the past about similar issues and having not got anywhere, he decided to he contacted Unity to see what could be done legally.

 

The good news is that today a judge has set a legal precedent by agreeing that the policy must be prioritisation for wheelchair users, as the ‘first come, first serve’ policy contravened the Equality Act 2010.  First have been given six months to retrain staff and put this in place, but the great news is the judgement will mean that all bus and train operators will have to adopt similar policies, or face similar legal action.

 

This is great news that will make travelling by public transportation  a little bit easier for people with disabilities.

 

Suceava Irisbus 1

Bus in Ireland (Photo credit: Wikipedia)

 

Why we’re losing the war on Disability Access

Why we’re losing the war on Disability Access

Access for people with disabilities is something I’m passionate about.  If there was another group of individuals in this country that were so utterly restricted from accessing shops, services, or simply going about their daily life – there would be an outcry.  Yet access for disabled people is something that is still regarded with apathy, ignorance, and a lack of understanding.

A typical sight on the High Street - a step that would stop a wheelchair user gaining access, that could easily by solved with a portable ramp.

A typical sight on the High Street – a step that would stop a wheelchair user gaining access, that could easily by solved with a portable ramp.

But I too was one of those many, many people that had no idea how poor access was in this country until I became disabled myself.  The first time it really hit me how hard something I’d found so easy such a short time time ago, was a few years ago when my mobility got to the stage where I couldn’t walk around the town anymore.  I signed up to Shopmobility and rented their smallest scooter in order to do some Christmas shopping.

The whole trip was a disaster.  Being winter, most of the shops had closed doors.  It’s almost impossible to reach from the scooter to open a door, hold it and drive through – and many of the doors were very heavy.  It’s also difficult to get off the scooter at every doorway to open it, and then drive through while standing and trying to hold the door!  If you’re regularly having to dismount from the scooter, it very much defeats the purpose of using one to reduce pain and fatigue.

So, I struggled to get into many shops – and this was while expecting to only be able to get into the larger chain stores.  Many of these shops packed their aisles with displays, which made it hard to get round.  It meant I had to regularly get off the scooter to move displays out the way in order to get through.

On top of this many shops had steps to get into them, or steps in the middle of the shop to another level that I hadn’t even thought twice about before.  Tills were difficult to get to, with many having tight pathways to follow, made all the more difficult by the excess of shoppers.

I also found a lack of dropped kerbs around the town centre, with market stalls or delivery vans across many of those that were there, meaning I often had to go a great distance out of my way to take a route I needed to go, which meant between struggling to get round every shop, having to take longer routes to avoid steps or to find dropped kerbs, in addition to the struggle with doors – the whole trip took so much longer than it would normally have done.

An example of a "dropped-kerb" that made my wheelchair slam against it.

An example of a “dropped-kerb” that made my wheelchair slam against it.

The final straw came in WH Smith.  It was the final shop I needed to go to.  I was pretty much shaking in pain and exhaustion before I even went in, but I immediately found myself stuck multiple times by narrow aisles and poor placement of displays – even worse than any other shop I’d been in, and then got completely trapped in a terrible queuing system.  While trying to manoeuvre to free myself, some shopping fell off the scooter.  In total exhaustion I got down on the floor to try and pick the items up, but shoppers continued stepping over me to join the queue – making me feel invisible and worthless.  Staff watched me, but ignored the whole issue.  Another shopper called out to a member of staff, asking them to help – but she simply stood watching.  Finally back on the scooter, the only way I could see out was to drive into a display and knock it, which I did – knowing the comments of ‘terrible driver’ I was getting.  Finally I reached the till to find it too high, and the PIN machine locked into position.  It may be funny to look back on, but this was my first outing using a scooter as someone in their early twenties, gutted at having to be using one anyway – and left mortified by the whole experience (and in agony!).  That embarrassment soon turned into anger.  Why an earth hadn’t a large national shop like WH Smith achieved the most basic level of accessibility?

I was so upset I wanted to do something, so I found my town had a disability access group, and wrote to them asking for their help.  Shortly afterwards I joined the group, and after a lot of nagging, complaining and meetings I was thrilled when WH Smith made a number of changes that made it much easier for people with disabilities to access their store.  However, a year later they changed their shop layout again and changed their tills to a self-checkout system that people in wheelchairs couldn’t reach, undoing all our hard work.  It quickly became clear to me that access was a big issue, and both achieving and maintaining it even harder.

This shop has a wide pavement outside, giving plenty of room for a ramp, but has chosen not to provide this.

This shop has a wide pavement outside, giving plenty of room for a ramp, but has chosen not to provide one.

In time I became the Chair of the access group but sadly we are extremely limited in what we can do to improve physical access.  Getting change isn’t easy.  Many shop owners simply ignore our requests, tell us it’s down to the council to provide ramps, or tell us they will make changes which then never appear.  Most of the time I feel the group just bangs our head against a brick wall – but when a positive change is made it’s a great feeling.

However, the law recently changed to make it much harder to enforce the Equality Act.  After lobbying from insurance companies, the way ‘no win, no fee’ cases are funded changed so that the claimant has to pay the insurance premiums upfront.  These can cost thousands – and are usually more than any damages/compensation would ever be.  This has made the ability to afford to bring a disability discrimination case about only possible to the very rich, whether the issue is something relatively simple like a local shop who won’t fit a ramp – to the worst possible cases of discrimination possible.

An excellent example of wheelchair access close by the main entrance.

An excellent example of wheelchair access close by the main entrance.

I’ve barely heard this issue spoken about yet, yet I’m completely horrified by this change and the damage it will cause.  It now means we’re relying on simply the goodwill of shop and service owners to make changes – which in many cases simply won’t happen.

This is yet another subtle change in the system that points overwhelming to a systemic campaign against people with disabilities that continues on.  But sadly – apathy and ignorance are winning this war.

For more on access, try the post Disability access made easy!

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Disability Access Made Easy!

Disability Access Made Easy!

In Britain we have pretty good disability discrimination legislation.  It’s quite extensive and covers physical access, employment and more.  The Disability Discrimination Act came into force in 1995 – eighteen years ago.  It’s been updated and strengthened multiple times since then – in 1996, 1999, 2004 before it finally ceased to exist and was instead included in much broader legislation called the Equality Act 2010.  This included seven different protected characteristics which included disability, and states that if two people with protected characteristics have conflicting needs, then the disabled persons needs comes first.

However, I believe there are two particular flaws with this legislation – the first is getting companies, building owners and service providers to pay attention, fully comprehend and implement the law.

The second flaw is around enforcement.  I will cover this issue in the post ‘Why we’re losing the war on Disability Access.’

Access Made Easy:

1) Access is generally about common sense.  This includes putting a little thought behind decisions such as the layout of shop, and quite simply treating people with disabilities like you’d wish to be treated.  For example – many shops have hearing loop systems, but don’t turn them on, fix them when they break, or train staff how to use the system.  If you put a blue badge space outside your shop door – don’t use it for storage instead!  If you’re installing a ramp to help wheelchair users and those with mobility problems, don’t put it at the back of the building.  The closer it is, the better.  The law states that it’s not enough just to have an adaptation – but to make sure that it’s usable.

2) Access doesn’t have to be expensive.  The law asks for reasonable adjustments, and does make allowances for cost.  It wouldn’t be expected that a small shop knock their entire shop down to replace it with a fully accessible one, or to install a permanent ramp.  There are always ways to improve access though – such as a lightweight ramp that can be moved, a doorbell placed outside to allow people to call for help if needed, a portable hearing loop system, etc.

3) Never underestimate staff training.  I have never had decent Equality and Diversity training, despite working for a range of councils, charities, universities and private businesses.  It’s usually a patronising online module that tells you nothing about what it’s like to be disabled.  There are lots of different kinds of disabilities out there and stereotypes attached to them.  Some are harmful, some are just assumptions.  Some I’ve heard just in the last week include:

• Wheelchair users cannot walk at all because their legs don’t work.

• AHDH is a fad, and is just naughty-child-syndrome.

• If someone is deaf just shout at them.

• If your child has Autism, then you should just be a parent and watch them at all times rather than expect their environment to be made safe.

• Only older people can have mobility problems.

Staff that have good training are going to lessen the chance of causing offensive, having complaints made about them – and more importantly increase the chances of meeting the needs of the customer and getting them to return again.

4) Accessible shops, or places with good customer service will get more custom.  Disabled people have money to spend too.  And to me – a shop that could easily make adjustments and hasn’t says to me “you are not welcome.”  It’s mostly because the shops in the town centre I live in is so hard to get around I moved to mostly online shopping.

A cafe in the town centre that is inaccessible to wheelchair users

A cafe in the town centre that is inaccessible to wheelchair users

A few months ago I wanted to buy a gift for someone, and only had one day to buy it.  My problem, however, was that my wheelchair was out of action.  I checked online to make sure it was in stock, and headed to Homebase.  The item I wanted was a plant – so I hoped if I could park outside the door, and go straight to the plant display nearest the door, I might just make it.  However, I couldn’t see the plant – so I staggered over to customer service, already way past my walking limit.  I explained to the lady I couldn’t stand long and couldn’t find what I wanted.  She immediately brought a chair round to me without asking, then went to find the item, rang it up and called for someone to carry it out to my car for me.  It seems simple, but it was so rare to be treated this way it actually brought tears to my eyes, which I know is pathetic!  I wrote to thank Homebase and the lady in question and hope all their staff are like that.  Next time I need to buy something gardening related – I’ll head to Homebase.

It’s important to note – most people will not complain about the step in the doorway, the packed displays, the till they can’t reach – they just won’t return.

5) New builds – get it right!  While there is a certain level of understanding that it’s harder for older buildings, if you’re creating a new public building then please make an effort.  The town I live in recently opened a massive shiny new art facility that cost £28 million.  I was therefore incredibly disappointed they got some really basic things wrong.  There was a whole list of issues – but a couple of the problems included a disabled toilet with an automatic light that turned off after a minute.  So the person had to get off the toilet, and go outside into the corridor to turn it back on, or have fun in the total darkness.  The second was the disabled parking was blocked off by locked bollards.  In order to park, a wheelchair user had to pull up in the road, get their wheelchair out, head the 30m or so into the building, find a member of staff, wait for them to unlock it, go back to the car, put the wheelchair back, drive into the space, and get the wheelchair back out again.  (For for many non-wheelchair users the distance was too far to reach the building from the road.)  It’s very frustrating when such basic things are done so badly.

Finally: 6) It’s the law so just do it! 

The staff in this shop ignored my attempts to gain access in my wheelchair.  The manager later stated no one else had complained they couldn't gain access.  But how many people didn't even try?

The staff in this shop ignored my attempts to gain access in my wheelchair. The manager later stated no one else had complained they couldn’t gain access. But how many people didn’t even try?

In terms of access,  which simple changes would make your life easier?

Rolling in the Deep…

Rolling in the Deep…

 

Credit to cuervo

Credit to cuervo

Sometimes I have those days – although in my case, it always seems to happen in the middle of the night. One of those oh god why does nothing go right things?

Sometimes I’m not sure why I’m so anxious, and why somethings become such a big deal. I’m currently trying to get my wheelchair replaced via grants, and in my desperate research to find any organisations that may actually give me any help stumbled across some research that showed people with Ehlers-Danlos are highly susceptible to miscarriage. It’s not like I’m anywhere close to having a child, or even know if I will have them – but if we didn’t have enough against us having children already.  First is the high chance of giving the kid the condition in the first place – and it possibly being the ‘die early’ type, not just the painful type. Then there is the possibility of my hypermobility vastly increasing during pregnancy – to the point of constant dislocation, and issues giving birth with the pelvis. Then there is the issue of having to give up the morphine for nine months, or have the child be born addicted to drugs and have to spend the first few weeks going through withdrawal in intensive care. So the cherry on the top is that there is a good chance the baby won’t survive anyway. Fabulous.  I don’t mean to feel sorry for myself, but I’m still learning so much about this condition.  I’ve only been diagnosed with it for a year – and am still getting to grips with how it all works.

Then back to the wheelchair. I bought this chair in July. Well, when I say I did – actually some members of my family clubbed together to buy it for me, but we made the error of buying it from Betterlife Healthcare – a company we now know to have appalling customer service, questionable ethics, and a very much ‘we don’t care your wheelchair is a pile of crap’ attitude.

It’s brilliant to have a chair that jams on everything going, let me tell you. I particularly loved in when my chair stuck fast on the flat ground when coming out of a church, with 200 wedding guests behind me. Or when my mum tried to unjam the chair in a shop, and the footplate came free so quickly she fell on the floor and her arms and legs were covered in bruises. Or when I left work the other day to pop to a shop and it jammed on a flat pavement – and an 85 year old in a wheelchair, with an oxygen tube, had to stop and help me!

And yes, we’ve complained. Their attitude can be summed up with ‘haha, we have your money, now go away.’ I don’t actually want a refund, I want a replacement – because a refund will leave me without a goddamn chair, and it was so incredibly hard to find a chair that met my requirements in the first place (and I promise it was basic needs, not ‘it must be glittery pink’.) I have searched for a new chair, but the next type that meets the standard of being light enough to lift into a car and foldable seems to jump up by about £4000.

Then I found this charity called Action for Kids, which despite its title is meant to offer help getting a wheelchair for up to 26 year olds. I contacted them months ago, and was promised a visit which has yet to occur, despite constantly chasing them. When I phoned to find out their requirements they seemed very confused, and they gave me an extensive medical form to fill in – of which listed only very specific conditions and total paralysis were mentioned, which is very confusing because people with those conditions would qualify for a wheelchair from the NHS as they would be totally unable to walk.

Oh yes, did you know the NHS has a wheelchair service? When I first was referred for chair a few years ago their policy for an electric wheelchair was that you had to use it indoors and out. As I lived in a postage stamp house I couldn’t fit a wheelchair in it, so that ruled that out and they gave me a manual one instead. This was great, except I manage about a quarter of a turn before my shoulders and arms go into spasm, and don’t recover for about a week, which meant mum was forced to push me, which is not easy. You think the world is wheelchair accessible? There isn’t much I can say, other that it’s not.

So then we skip forward to buying the crap electric wheelchair, and it constantly breaking down.  We then moved into an accessible bungalow and I am now having to use the chair a lot more now, even in the workplace.  So I contact the NHS again and they inform me the policy has changed – they now only give them to people who cannot walk a step. Ever. I explain I cannot use a manual wheelchair. She’s sympathetic. I tell her my mum has damaged both her shoulders from pushing the chair, and lifting it in and out the car. She’s even more sympathetic. Then she tells me tough luck, policy is policy. Okay, she didn’t use those words – but it was implied.

And so I am here with a wheelchair which currently has no footplates. I got replacements a couple of weeks ago, but they both snapped off last week. On even ground. Action for Kids implied it would be months and months before I got near the top of the list, plus they judge you on whether you actually deserve a wheelchair (i.e. not on medical grounds, but there is a section on why you think you should be given one).

The warranty for my chair runs out in July. If I ask for a refund for the chair I will struggle to work, run the access group, or go out anywhere. If I don’t I’m stuck with it forever.

I need to apply for grants, but I just don’t have the energy at the moment.

I kind of need a shoulder to cry on right now, as it’s all a bit overwhelming, and at the same time I need someone to say oh pull it together and stop whining, you aren’t having babies any time soon, and it’s just a fricken wheelchair!

Yeah, it’s one of those nights.

Visit to the Ideal Home Show 2012

Visit to the Ideal Home Show 2012

One thing that still bothers me after all this time of having mobility issues, is the problems that visiting new places brings.  I’ve just spent the weekend in London as a birthday/Mother’s Day treat for my mum.

Trips like this involve a lot of planning.  One particular issue is finding close parking, but it’s pretty hard when London’s involved as it’s such a maze.  Even having parking near enough doesn’t mean there will be dropped curbs, or that the wheelchair won’t get stuck, or the battery won’t run out, and many of these issues you can’t plan away.

On Sunday we went to the Ideal Home Show.  Online a ticket was £14, but because we needed a carers ticket, you couldn’t purchase it in advance so we had to pay on the day – now £18.  (Strike one!)

The Earls Court website informed us there was plenty of free blue badge spaces close to the entrance – great!  This helps with the dropped curb issue (which doesn’t just happen in the middle of nowhere, it happens all over the place.)

We arrive to find a whole row of blue badge parking, except every single one is cordoned off.  Not filled, which we’d just have to live with – just roped off for no reason.  The car park is available though, they tell us with a smile, but it charges by the hour.  Having a wheelchair takes a lot longer to get round things, so that added an extra £25 to our day.  (Strike two!)

Credit to: edouardo

Credit to: edouardo

The car park is at the back of the building – so getting to the exhibition was quite the trek. (Strike three!) It would have been totally impossible without the wheelchair, so how ambulant disabled people coped, I don’t know.  Actually, I do, having been to The Back Pain Show at Olympia recently, the same company as Earls Court, we found the parking at the back of the building and having to pass two other exhibitions to get to the right entrance, once of which being a wedding show.  I’m not saying disabled people don’t get married, but one assumes more disabled people will be heading to the show about combating pain.  We were hiring a wheelchair at the exhibition, but they hadn’t thought about bringing it round to us – so by the time we got there I was almost throwing up in pain.

Back at the Ideal Home, my wheelchair battery was playing up, and by the time we made it from the car park all the way there, I only had a tiny bit left.  We headed straight to the top floor for lunch, as I worried about how the hell we were going to get around with minimal battery.  We’d bought the charger with us, in case there was a spare plug, but they were all up too high to reach.

We spotted a tea room style area for lunch, and headed over.  There was plenty of free tables at the back, but when I asked if there was a route for wheelchairs, we were met with a blank stare and told it would be a half hour wait for a table we could get to.  (Strike four!)  Instead we headed to an Italian styled cafe, which sold nothing Italian.  We shared a sandwich, one packet of crisps and a drink each for £15.  Ouch.

The layout of the exhibition was pretty good, with enough space to negotiate and view the stalls.  A kind stallholder allowed us to charge my batteries while we tried out some pain relieving equipment.

I do have some rules regarding navigating with my wheelchair.  It’s actually quite hard to steer, so I really appreciate those that step out the way.  I really do.  I avoid people as much as possible of course, and I do my best to halt for children.  However, if you stop dead in front of me, or walk backwards into my path – you are fair game.  Be warned.  Plus, nobody needs to walk backwards, so why do so many people do it?!

Even with the space, having to constantly stop for people and wait to look at things, it took pretty much the whole afternoon to get around the top floor.  By the time we got down to the actual ‘home’ section, we only had forty minutes to go.  To be fair, we don’t have any money and don’t own our home – so kitchens, bathrooms, etc don’t interest us.  And no, I don’t want to buy any goddamn solar panels.

The show homes were not wheelchair accessible, and seemed to only be accessed by stairs, which was a shame, as I’d have been interested to see them.  (Strike five!)

We were both pretty exhausted by then, and tried to head to the exit.  After going round in circles, we asked a member of staff the way out – one of which who grunted and pointed to the lift.  We got out at the next floor after getting the wheelchair jammed in the lift due to it not stopping straight, which broke my footplate, only to be told we’d been on the right floor previously.  The next member of staff we asked pointed vaguely, and again was wrong, and when we finally found the exit no one was there to operate the stairlift.  When we called for help they said we had to find another exit.  (Strike six!)

All in all – a tiring day, that wasn’t worth the money we paid, although we got some interesting bargains whilst in there.

Above all, I was disappointed such a big organisation hadn’t thought more about accessibility.  Signs to the exit and signs for wheelchair access would have been helpful, and why an earth did they prevent access to so many disabled bays?  Staff should be trained better as well.  Lower-cost parking for blue badge holders would be very appreciated – many of us don’t have a choice but to drive there, or not come at all.

 

Good news and bad news

Good news and bad news

My job offer is now formal – I’m so pleased.

I have a lot on at the moment.  Our local council has decided to remove access to all the central, level blue badge spaces in the town centre and add more to the existing car parks on the outside of town.  They are much too far for disabled people to walk to.  For over a year as chairperson of the local access group we’ve been fighting the decision and trying to get them to come to a compromise, but they haven’t been interested.  Yesterday they published the official order to make the changes, so I’m madly working on a response to the formal consultation.

My wrists have chosen now to flare up as well, which is making life quite difficult.

Credit to: Michel Meynsbrughen www.prestonotes.c.la

Credit to: Michel Meynsbrughen
www.prestonotes.c.la

On Speeches and Hospitals

On Speeches and Hospitals

I haven’t updated in awhile, because I think I’ve been in a bit mentally exhausted.  I seem to have something on every day – whether it be medical, or the voluntary work I do for on disability access – I could do with a break, but the show must go on!

I had an assessment at the Royal Orthopaedic Hospital to see if they will accept me for their three-week inpatient pain management programme.  It was a bit of a nightmare with my electric wheelchair wheel dying just as we got to the hospital, only for them to say we’d been sent to the wrong building anyway.  I had to wait for a porter to get me – who came half an hour after my appointment time.  I have to say my anxiety levels hit the roof and exploded through.

It does involve a shared ward which is quite a worry, as I can’t deal with light or noise and sleep very lightly, so other people snoring is a big worry and not being able to go to bed when I’m shattered as we have to be up at 7am which is going to cause loads of problems for me!

Credit to Melodi2

Credit to Melodi2

In other news our local council are making plans to make the High Street buses, taxis and motorcycles only.  This is causing a lot of concern as this is the road a lot of blue badge holders park along to access the town.  It’s also going to cause mayhem in all the rest of the town, as when one part closes it causes deadlock.

I’m on the committee of the local access group – just become acting Chair, in fact.  I’m trying my best to get the council to reconsider, or even just to respond to my emails – without much luck.  I was feeling a bit alone, until yesterday when there was a flurry of supportive emails from people including councillors.  Then yesterday I made a speech at the local cabinet meeting on the issue – which is quite funny, as I’m the person that skipped most of English in year 9 to avoid giving a talk, but it went pretty well.

It seems to have made some difference with the right people getting involved now.  So here’s hoping we can make a bit of a difference here.