by The Chronic Chronicles | Aug 13, 2014 | Access
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?
by The Chronic Chronicles | May 31, 2014 | Awareness
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome is a connective tissue disease, caused by faulty collagen. Collagen is the ‘glue’ of your body and is part of your skin, organs, ligaments, tendons and much more. The condition is multi-systemic, which means it impacts almost all of the body in some way, including the heart, lungs, auto-immune system, gastrointestinal tract, eyes and in lots of different ways that are too numerous to mention. There are different types of the condition, which range from highly disabling, to some types which are even fatal.
The most common type of Ehlers-Danlos Syndrome is Hypermobility type. This is because the most prominent sign is the Hypermobile joints – colloquially known as being ‘double-jointed’. This can occur in any joint, and means the ligaments and tendons aren’t holding the joints in place as they should, and allows the joints to over-extend. This causes damage in the connective tissues surrounding the joints. Joints can also dislocate, or semi-dislocate (subluxate) which is very painful.
As the connective tissue isn’t doing its job, the muscles take over. This means they’re usually tight and in spasm, and overwork which causes additional fatigue.
The condition is genetic and two-thirds of sufferers inherit it from one of their parents. One third get it through a genetic mutation.
How does it impact me on a day-to-day basis?
While I was born with it, the symptoms throughout childhood seemed random, so no one ever realised there was an underlying condition. I had lots of bouts of pain throughout my childhood that doctors dismissed as growing pains, and often my legs or ankles would give way and I’d fall to floor for no reason. My healing was poor and left scars easily. Simple tasks like tying my shoelaces were difficult, I struggled to write for long periods, and my handwriting was awful.
At the age of 15 my pain became constant. I now know this is a very common time to trigger the condition more seriously, but it took almost nine years before a consultant finally stopped shrugging their shoulders at me, and put a name to my condition. For all those years – the years most people are growing up, and having a life – I was getting home from college, or university and collapsing in bed, and spending all my money on alternative therapies to try and get some relief as the doctors couldn’t offer any help.
I have never had a pain-free day for almost twelve years. It’s unrelenting, and even worse is unpredictable. One day I could be limping from my left leg and unable to move my arm, and the next day they’ll be fine but my hip feels like it’s on fire and my neck is locked in place. This is makes it difficult to know what I’ll be able to do that day – and how much help I’ll need.
The condition impacts the auto-immune system and produces too much adrenaline, so I sleep really badly, and have insomnia. The fatigue is crippling, and I often have to spend all day in bed, or unable to function. Often just being able to do a simple task like have a shower, or get dressed is an achievement and all I’ll be able to do that day.
To be able to do something else – like go to a friend’s house, have a meal out or even worse – attend an all-day event is a bit of a nightmare, and involve lots of planning. For days in advance I’d need to rest to conserve my energy, then on the day take every painkiller available, and use every bit of my strength to get through it. Recovery will usually take weeks.
My hypermobile joints are particularly bad in my spine, and so I’ve developed bulging discs, arthritis, degenerative lumbar disease, scoliosis and cysts on my spine due to the over-extension there. As a result my mobility is impacted, and I can only walk with extreme pain, and so use an electric wheelchair.
Why is awareness so important?
The diagnosis rates of the condition are really poor. The average time of diagnosis for sufferers is over ten years, but for many it’s much longer, and some even live their whole lives without knowing what’s wrong with them. Many are also misdiagnosed with other conditions, or told it’s all in their heads. Ehlers-Danlos Syndrome is estimated to affect one in 5000 people in the UK, however according to a recent study, around 95% of cases go undiagnosed or misdiagnosed every year, meaning this figure is in reality much higher.
EDS is treated terribly by the medical community. I wrote a little more about this topic in Rare Disease Day and Ehlers-Danlos Syndrome. In general most doctors spend a few minutes covering the condition in their studies, and so don’t recognise it when they come across patients who are looking for answers. It’s also highly neglected in terms of research, care, NHS services and provision of medical expertise. There are only a couple of specialists in the whole of the UK for the condition, which are usually oversubscribed due to the demand.
There are some quite simple ways of looking out for the condition, so we need to get the word out to front-line medical staff – GPs, nurses, physiotherapists – as well as members of the community, so they can spot the signs as early as possible, and get help for people before they have to live years in pain without understanding why.
In summary:
If you recognise any of the symptoms mentioned above in yourself, your child or someone you know – particularly hypermobile joints, long-term chronic pain and other unexplained symptoms – please seek further medical advice, and request to see a specialist as soon as possible.
The Awareness Ribbon for EDS features a Zebra Print. This is from the phrase taught in medical schools – “When you hear hoofbeats, think horses, not zebras.” This means when presented with a set of symptoms – the most obvious answer is usually a common condition.
EDS adopted the zebra to say – hey, rare conditions exist too!
by The Chronic Chronicles | May 1, 2014 | Awareness, Education
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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by The Chronic Chronicles | Jan 26, 2014 | Access, Wheelchair
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
by The Chronic Chronicles | Jan 22, 2014 | Benefits, Opinion
Yesterday I had an assessment by Social Services for Direct Payments. I’d been waiting about seven months for it after being assessed as ‘Urgent’. The Social Worker was fine – we talked through my condition, how it impacts me, the average day and what help I need.
What I did find interesting during the assessment is that after I was asked to give an overall idea of the help I’d ideally like – she then gave me a list of everything that my Disability Living Allowance was expected to cover, and so Social Services would not. From my list this included all cleaning, gardening, treatments not covered by the NHS, help with pets, and any activities even if they related to quality of life/better health and more.
As an aside, while I was aware of the cleaning issue, I am appalled that Social Services won’t help people with disabilities with cleaning at all. It’s not a cheap service to have, and I find it totally impossible to do such physical tasks as hovering, dusting, clothes washing, changing the bed sheets – and there’s people a lot worse than me out there. So they’ll pay to get you out of bed, and showered – then leave you in squalor to fend for yourselves?
But, back to my main point, I thought it was interesting how far she expected DLA to stretch. I currently use my DLA for an adapted car that has a hoist for my wheelchair. Without this, I couldn’t leave the house – as my wheelchair won’t go on buses, and wheelchair-adapted taxis are a rare sight to behold in my town (and usually double the price). Other people will often use this payment to hire a wheelchair from Mutability, or on taxis to get out and about.
Out of the rest of my DLA I and many others pay for things like extra heating, carers, mobility aids, therapeutic devices, special clothing/shoes, food that’s easier to cook (pre-prepared), the higher rents of accessible accommodation, medications, supplements, extra washing loads, specialist exercise programmes, special cushions, adapted items, insurance for wheelchair/scooter, petrol for additional car journeys (doctors/hospitals/travel to specialists often miles away, physiotherapists, other therapists, assessments as well as journeys most people would walk – but you have to drive instead) and so much more.
Of course people with disabilities are statistically more likely to be on a lower-income than the average person, even when able to work. So DLA may also help towards rent, bills and normal day-to-day living costs.
When I was trying to obtain an electric wheelchair through the NHS, as I am physically unable to manually propel – I explained I was using my Mobility Payments on a car that I needed to get to work. The assessors response was that I should be using it on a wheelchair. I pointed out that if I used it on a wheelchair and gave up my car, the wheelchair would have to live in the garden – and I would have to live on the sofa, as the car was vital in transporting the wheelchair, so what would be the point of that? She had no answer. It seemed it was their policy to be telling people to spend the DLA on wheelchairs too.
But it doesn’t cover a fraction of the extra costs I have for being disabled, and while I totally understand there isn’t a limitless supply of funds – it doesn’t help when agencies are putting more and more strain onto the benefit. Exactly how far do they expect DLA to go?
