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?

New Wheelchair!

New Wheelchair!

I had a lot of problems with my wheelchair, as I’ve spoken about before.

Luckily for me, my quest for a refund was successful.  However, it then left me without a wheelchair for six months.  I cannot begin to describe the frustration this has caused – taking away my independence.  I haven’t been able to do something as simple as pop to the shop for six whole months.

You’d think getting a new wheelchair would be easy, right?  Just a case of ringing the NHS and saying ‘Hey, I can’t really walk.  Can you order me a chair?’  ‘Yes, no problem, we’ll get right on that.’

No.

No, no, no.  That’s not how it works.

Okay, but social services must be able to get you one, right?

Nope.

Now, the NHS does have local wheelchair services.  They each have different policies.  My local one has a policy that if you can walk one step, one tiny, measly little step – you can’t have an electric wheelchair.  You can have a manual chair though, even if you physically can’t push it yourself, and don’t have someone strong following you around all day to push it for you.  So, to be fair – they did give me a manual chair, that sat dusty in my garage because I can’t push it at all, and my informal carer, my mum, has two frozen shoulders.

So then I looked for charities that may be able to help.  None of my conditions have a particularly large charity, so that was out.  There are a couple of children’s wheelchair charities - that go up to age 25/26 – but have massive waiting lists.

Now lucky me, I came across an answer – Access to Work!  I’d just started a job, a year ago, when I made my application.  I knew my wheelchair wouldn’t last, plus my needs had drastically changed – I needed something comfortable that fit my needs.

Now, I believe Access to Work is an amazing organisation that do a lot of fabulous work, but this whole process has been bogged down for ridiculous reasons.  Basically, I have an adapted Motability car, and a wheelchair that would fit my needs wouldn’t fit into my Focus.  It needed to be taller to fit a more robust wheelchair hoist in.  And I needed for pay for it again, and pay for all the expensive adaptations, and I didn’t have any money.

So then started the biggest circle-jerk waste of time known to man.  Responsibility was passed between Access to Work and Motability like the latest contagious virus.  Neither would take control, both had the answer of ‘speak to the other.’  Hence why six months later when my wheelchair finally got taken back for a refund, I was left ANOTHER six months with nothing.

It wasn’t all their fault – it took ages to find a chair that fitted my needs, and ages again to pick a car that was right for me.

But enough with the whining – I now have a lovely, amazing wheelchair.  It’s the TDX Invacare, and it runs like a dream.

 

The hoist lifting the chair

The hoist lifting the chair

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IMG_9453

IMG_9454

The bar handy to put hooks to hold bags.

The bar handy to put hooks to hold bags.

I HAVE MY INDEPENDENCE BACK!

On-Going Issues with Betterlife HealthCare and my quest for a refund

On-Going Issues with Betterlife HealthCare and my quest for a refund

Credit to Catalin82

Credit to Catalin82

In July I got a new wheelchair as I posted about here.  Sadly, it hasn’t gone so well and the company I got it from have been awful.  I have phoned, written and begged the company for a replacement for over a year.  Last night I post my temper and wrote to the CEO of Betterlife Healthcare.  I hope this gets an answer.  If it doesn’t – it made me feel a little better.

Dear Mr Abrahams

I am writing in regards to the on-going saga which can be summed up by the fact in July 2011 you sold me what you define as an ‘Aries wheelchair’ and I define as a ‘useless piece of rubbish that regularly breaks down, or regularly has pieces falling of it – interspersed with the most appalling customer service I have ever received from a company’.

First of all, I’m not sure if you’re aware, but people who generally use wheelchairs either can’t walk, or find it difficult to. We generally rely on them, and find them quite important in our lives. I get the impression from your company you don’t understand this vital function by you way you have treated me over the past year, so I just thought I’d clear that up for you.

On to the point of this letter – one of the many letters, emails and phone calls I’ve had to make over the past year. I agreed to you taking the chair away for an inspection, despite having taken a day off work a few weeks ago when you sent a technician to carry one out – who then took photos for 30 seconds and then left – with no report forthcoming. So I agreed to another inspection only on the proviso I was given an alternative suitable chair.

First I was called by someone who said they were bringing a scooter – I’m unsure if it really was a scooter, as so many members of your staff have an incredibly annoying habit of calling wheelchairs scooters, which is a shame because I would have thought as a mobility company you might be aware of the differences between the two just by looking at them. Silly me.

I explained I did not want a replacement scooter, but a wheelchair, but the lady then came back to say I could have a loan chair, but it could only be used indoors. That obviously did not meet the definition of an ‘alternative’, just as if I was offered a loan car but was told I couldn’t leave my drive way, then eyebrows would clearly be raised. The weird thing about wheelchairs is that you generally use them to leave the house, so I declined this ludicrous offer.

My next offer was a specific wheelchair that I was given the name of. As my trust with your company is on a par with the countries feelings towards the banking sector, I decided to google this before accepting. I immediately noticed the weight limit of the wheelchair did not meet the accepted level I had just informed you of 30 seconds ago. I was then told there was no other alternative, so we were left at stalemate.

My mum then decided to help me by contacting a manager at your company, Heather, to try and address this, and Heather promised a suitable alternative would be given that could in fact leave the house, met the weight limit, and go into a car. Great! Except this was the same Heather who twice promised me a replacement chair, then denied all knowledge and said I was lying when it came to actually obtaining said replacement. So again, my trust? Bob Diamond level.

The technician came today to pick up my sorry state of a wheelchair, which currently looks like something that’s had a very hard life – with all four tyres going flat despite regularly pumping them, the replacement footplate not clicking into place, the glue or bolts holding the side of the wheelchair in place having fallen off – leaving both sides flapping, and just to top it off – as the technician lifted the chair, something else fell from it, like something out of a comedy sketch. Except I don’t find it funny.

He then handed over a wheelchair – a rickety looking thing with a big split across the headrest and left. Firstly, it wasn’t charged – which means I won’t be able to use it until tomorrow, which seems really rude of you – but I suppose a blip on the radar at this point. Worst of all – it’s that specific chair I declined. You know, that chair that doesn’t meet the weight requirements?

I used the last drops of the battery life to take it to the back of the house, as it wobbled away, and theb tipped as I went round the corner but was luckily saved from falling by my mum. So that ‘replacement’ chair can’t actually be used as it’s yet another completely pile of rubbish, which I suppose I was expecting from your company.

I’m tired of emailing or phoning you begging you for a refund, saying I’m ‘shocked and appalled’ with your service and unhappy that I’m housebound as I wait yet another repair on the chair. I oddly enough have better things to do. So here’s a suggestion: just give me my money back so I can get a replacement chair from elsewhere, and you can carry on treating your other customers with contempt.

Yours sincerely

Jade

Edit: I got a response the next day offering a refund!  I went back and requested some compensation for all the injuries and suffering caused, and the times I’ve been trapped indoors for months on end due to the wheeelchair breaking.

He came back to offer 10% off my next wheelchair from them.  Needless to say – I said no.

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.