Ignorance, Exclusion and Invisibility: the reality of being disabled in the UK

Ignorance, Exclusion and Invisibility: the reality of being disabled in the UK

This post is written for Blogging Against Disablism Day 2014. There are lots of excellent contributions for you to read, so please take a look.

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It’s the feeling of being completely invisible.

From the people who step around you in queues, or those who look the other way when you’re doubled over crying in pain in the middle of Next, or the people who don’t look down as they walk, and you’re saying, “Stop!” but they walk into your wheelchair anyway, and exclaim, “Oh, I didn’t see you there!”

It’s sometimes down to ignorance, a feeling of it not being their problem, or the person simply being lost in their own world.

38% of people believe disabled people are a burden on society.

But these attitudes spread quickly, and seep into all parts of life.  That mindset becomes casual and mainstream, and people feel they can share their thoughts with friends, in public, or even in the workplace. Take one of my managers who said dyslexic people were just stupid, or another who after someone who had two children with Autism asked for support, received a response of, “You should keep your children under control.”  Or after an office-place visit from a group of servicemen who have Post Traumatic Stress Disorder got a comment afterwards stating, “Well, they all looked fine to me.”

It also means that despite the Disability Discrimination Act being introduced 19 years ago, and strengthened in the Equality Act in 2010 – so much of the country remains completely inaccessible.  Shops, facilities, services and buildings still haven’t complied with the law, and continue to get away with it. 

47% of disabled people currently work compared to 77 % of non-disabled people.

I’m a wheelchair user, along with 1.2 million other people in the UK.  Last week I had an appointment at my new doctor’s surgery.  Their website proudly states the following on the front page: “We work from a purpose-built surgery with good parking facilities at the front, with wheelchair access.”  Yet I was faced with three problems before I even reached the treatment room.  The front door was really heavy, and swung back to smack my chair while trying to get in.  The receptionist, who had watched this struggle, was behind a high desk which meant I had to call up to her.  Luckily I was just telling her I’d arrived, but had I wanted to have a conversation privately, it wouldn’t have been possible.  The treatment room is at the end of a long corridor, and just before her room was another door propped open.  As I got there, the door suddenly swung closed onto me.  I tried to open it and push forward, but the doorframe was so narrow – I couldn’t get through.

More than 1 in 4 disabled people say they frequently do not have choice, or control over their daily lives.

My doctor eventually heard the bangs and came out, and it turned out the door had an automatic opener – which for some reason had suddenly failed.  That alone was annoying, but I then had to dismantle my wheelchair part by part, with my GP watching me.  I have never had an issue getting my wheelchair through a standard width door before.  I then had a very awkward drive into her room, trying to hold everything, control the chair and navigate the packed room.

I was mortified.  I thought, ‘She’ll think I’m a bad driver!’

Only later did I think – that was their fault.  Why should I now be afraid to go to see my GP as I can’t face it happening again?

This happens time and time again.  I can’t get into the vast majority of the shops in the town I live in.  Those I can have difficulties – narrow sections, steps, are too packed, put displays in the aisles, don’t have a lift, and so on.

65% of people have admitted they avoid disabled people because they don’t know how to act around them.

Over the past few years it hasn’t been possible to pick up a newspaper without finding a story on the welfare state within.  Quite often these stories have focused in on people with disabilities, painting a picture that many are claiming fraudulently.  How often do you see headlines such as ‘Disability benefits cheat caught out when she was spotted walking the Great Wall of China’ from The Express, or ‘Benefit cheat who claimed £21,000 in disability benefits while working as a boxing instructor spared jail’ on the Mail Online.  Or vague headlines that cast doubt on the system itself, such as another by the Mail Online, ‘ Disabled benefits farce: 94% of new claimants have never been assessed by a doctor.’

180 disability hate crimes are committed every day in this country.

While obviously every case of fraud is one too many, the fraud rates of disability benefits are very low.  The scrutiny over benefit claimants has had consequences.  It has become quite clear that certain sections of society feel that because some people with disabilities receive a form of state assistance, funded by the taxpayer,  they should then get a say over their lives.  A judgement, a decision over who exactly fits into the category of ‘disabled’ and who does not, and how they should be living their lives.   Also over the last few years the support systems available to people with disabilities have been slashed – within the NHS, Social Services, charitable funding and the benefits available to them.  Yet the public outcry to this has been minimal.  Perhaps they’re too busy reading stories of the lavish lifestyles of benefits claimants, and mainstream documentaries portraying a vision of exactly what these ‘scroungers’ get up to behind the scenes, which increases support for further cuts.

The reality of the situation is completely different – the vast majority of claimants are genuine, and live in fear of the brown envelope arriving from the Department of Work and Pensions saying their support is being reassessed, causing stress and anxiety it may be lost entirely, or reduced.  This fear isn’t unfounded – it’s a stated aim by the government.  The money is vital in paying for care, transportation and all the high costs associated with having a disability, of which there are many.  The Joseph Rowntree Association has found that people with a disability should be receiving at least £200 more per week just have to have an acceptable quality of life, with the rate increasing significantly depending on their needs and disability.

The poverty rate for disabled adults in the UK is twice that for non-disabled adults.

Disabled people shouldn’t feel dehumanised, excluded and invisible.  But how do we stop this trajectory from happening, and make inclusion a priority?

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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

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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