Is it time our Paralympians spoke up?

For a few weeks ever four years, the British public talk about the ‘inspiring’ athletes who have overcome adversity to win us another haul of medals. And don’t get me wrong, they are inspiring. As a sports lover, who is also disabled, I like watching people I can identify with succeeding in their different disciplines. It pushes me to try harder in what I do, reminds me that I can still achieve, albeit in different directions than those I pursued as an able-bodied person.

But did you realise that some of the difficulties faced by the disabled community could be lessened? Although there is no magic wand to wave and make impairments disappear, there are two main areas which I believe hold back many people with disabilities.

 

1) Disabled access to leisure activities and shops

It is disappointing how many businesses deny access to disabled people simply through lack of a ramp, braille, or accessible toilets. An audit in December 2014 found that only 15% of businesses reviewed offered hearing loops and 75% of restaurants did not offer a menu printed in braille.

The same audit, commissioned by the MP Mark Harper, stated that 20% of shops did not have a ramp for customers with mobility problems, but I know from experience that even some with ramps are impossible to use unless you have someone accompanying you. Many shops keep a portable ramp tucked away somewhere, but unless the till is near the door how am I supposed to ask a member of staff for assistance? I could shout at the top of my voice, but to be perfectly honest I’d rather not! Even when I’ve had a friend/relative/carer with me to go inside and ask on my behalf, I have discovered that it is not uncommon for the staff to not know whether they have a ramp, where it is kept, or how to correctly place it for me to safely get into the store. I have actually had another customer lift and reposition a ramp as it was unsafe to use.

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Picture courtesy of http://www.localgov.co.uk

Changing Places is a charity which campaigns for accessible toilets across the UK. While approximately 40% of shops have no disabled toilets (according to the audit mentioned above), ‘accessible’ often only means no steps and a hand rail or two if you’re lucky. According to Changing Places, a quarter of a million people require more than this. We’re talking about a bed or changing table sturdy enough to hold anyone from a child to an adult, plus a hoist and room for a carer to assist. The alternative is to sit in a wet or dirty incontinence pad, get changed on the (often disgusting) floor, or not to leave home at all.

How many more people would be able to access sports if their local leisure centre had a Changing Places toilet? Or if an inclusive class was offered?

I have had mixed experiences at my own gym – on one hand the trainers are happy to adapt things to allow me to join classes or to help me use the equipment, but on the other hand there is no lift or ramped access to the upper floor. I am left to choose whether to risk a fall on the stairs, or simply miss out on the machines that reside up there. This is not an unusual situation, judging by statistics which emerged this year, showing that only 17% of adults with a long-term health condition take part in sport every week, compared with over 35% of able-bodied people. Yet 83% of the disabled people polled stated that they would like to participate in more sport.

2) Financial restrictions

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Picture courtesy of http://www.sportinherts.co.uk

Accessing sport can be expensive at the best of times, but when you might need specialist equipment (a wheelchair for playing basketball can cost anywhere from £2000 upwards),   a carer to accompany you or help with transport, it can be prohibitive. The disablitiy benefit PIP (Personal Independence Payment) is supposed to do what it says on the tin – allow disabled people to live as independently as possible, and to help cover those costs incurred by poor health or disability. It is not so that we can live lives of luxury, it is to aid us to access the same opportunities as an able-bodied person.

PIP is not dependent on your work status. In fact, many people use the money awarded to support themselves to access paid or voluntary work.

However, in the Government’s wisdom, they decided to change the criteria for this benefit. It was a barely concealed attempt to save money in a troubled economy, but it makes no financial sense – and that’s before we even look at the ethics. As I stated above, many people can only access work because they receive PIP and some choose to use the mobility portion of the benefit to obtain an adapted car. When 600,000 people had their benefit reduced or withdrawn during the change from DLA (Disabled Living Allowance) to PIP, a lot of them lost their Motability cars too.

Even some Paralympians themselves have lost their cars due to benefit cuts.

Freya Levy dreamed of competing in the Paralympics, but lack of suitable housing meant she had to drop out of training and lose out on a potential place in the GB wheelchair basketball team. A report in 2015 by Breaking Point found that 70% of disabled people who approached their local authority for help with housing were not offered suitable accomodation.

Think about that for a moment.

Seventy percent of people who were in a position where they had to leave their current home could not be helped by their local authority. They have nowhere suitable to live. This can mean no access to a private bedroom, lack of ability to prepare food safely, or even being unable to use their own bathroom.

If you can’t even have a shower in your own home, how likely are you to participate in sports or hobbies?

 

So what can we do?

While some Paralympians have spoken out about barriers to accessing sport (here, for example), I believe that a more concerted effort might help those people who are so proud of our athletes to realise that when they vote for benefits cuts they may be preventing future potential medal-winners from acheiving their goals. They are causing the lady down the street to lose her car and subsequently her job. Affecting the teenager who wants to live independently but is forced to sleep in his parents’ living room because there is no accessible housing available and he is too heavy to carry up the stairs now.

Our Paralympic athletes have the attention of the country at the moment, while they are still riding the high of their amazing medal tally from the 2016 Paralympics. It’s not their job to stand up for all disabled people, but if they could lead the charge it might gain us more traction.

This is their chance to speak up, and our chance to listen.

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Picture courtesy of http://www.disabilityhorizons.com

 

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Camping Hacks – camping with a disability

I love camping.

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crocheted bunting hanging on a tent

Don’t get me wrong, the fact that it is cheap once you have the equipment already is a bonus, but even if I were rich I would still go camping.

It’s that feeling of sitting in a field as a few wispy clouds float overhead.

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reading in a sunny field

Sipping a cup of tea or a cold bottle of cider.

Reading, crocheting, seeing my son enjoying the freedom that comes from living temporarily outdoors.

Watching the sun go down and the stars appear, the moon shining down over us as we snuggle into sleeping bags and whisper goodnight to each other.

 

I love it.

 

 

But camping, for me, has had to change. I once went on holiday with my partner at the time – neither of us had a car, so we took our mountain bikes and went on the train. We cycled ten to twenty miles each day with everything we needed for the week stuffed into rucksacks on our backs. It was a one-burner stove, two-man tent, wear the same clothes for most of the week kind of trip, and it was brilliant.

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campsite

These days I would be liable to dislocate my shoulder wearing a heavy rucksack, and set off muscle spasms in my legs trying to cycle. And as much as my husband would giggle if I repeatedly toppled over into a hedgerow, I’m not sure it would make for a good holiday (or marital harmony!). If I tried to sleep on a thin roll up mat, or sit on the floor to cook, I would be in too much pain to enjoy my time away. So I approach the world in a completely different way to ensure that I don’t miss out – I just do it my way.

There are some things I have discovered/bought/adapted to make camping easier. If you have mobility problems then you might find them helpful, and if you have any tips for things that have worked for you then please let me know!

1) Choose your tent wisely

If you are a wheelchair user, then you need a tent that has wide entrances for your chair, and room inside to sit under cover or stow it when you are sleeping. If you can stand, or you have a carer with you who will be helping you transfer, then a tent with proper standing height is invaluable. Many an aching back will be saved by not needing to stoop over while getting dressed, for example.

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tent with wide doorway

2) Space

Not the ‘final frontier’ kind, but one that coincides with my first tip. If you’re anything like me, you’ll be taking quite a bit of stuff (it’s a technical word!) with you on holiday. From wheelchair to crutches, splints to medication, it all takes up space. In a two-man pop-up style tent there is barely any room to store anything, as the only floorspace is your sleeping area. I have found that it is worth finding a tent with a living area, so that I can keep all my stuff, but particularly the medical equipment, safe and dry.

3) Lock box

If you carry a lot of strong medication, especially if you are likely to spend a lot of time away from your tent exploring the local area, it may be worth getting a small lock box to ensure that your medication is safe.

4) Cooker stand

Sitting on cold ground, or crouching over a cooker on the floor is fine if you’re fit and well, but if that’s difficult for you then a cooker stand makes life so much easier. It makes cooking safer too – I know I once managed to set fire to the grass by using a cooker on the floor. Shhh, don’t tell anyone! There are various styles at different prices. My basic one is a bit of a pain to put up and fold down, but it was cheap and folds flat for easy transportation.

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tent with a cooker on a stand

5) Contact the site (ground, access to toilet block, parking near tent)

Some sites will claim to have disabled access, but then have a step to the bathroom, or gravel paths which limit your ability to get around the site independently. On the other hand, my favourite site doesn’t claim to provide disabled access, but I contacted them before our first visit. They quickly told me that there are some uneven paths (which my powerchair can cope with), but there is level access into one of the toilet and shower blocks, a stool to use in the shower, plus they offered to let me charge my powerchair in one of their buildings overnight as we didn’t have an electric hook up at the time.
You may find that some sites suit you but wouldn’t suit a person with different needs, and there are friendly campsite owners out there who are willing to work with you to ensure you can enjoy your holiday, so it’s definitely worth sending an email or making a call before you go.

6) EHU

So, I mentioned that when we first planned to camp with my powerchair we didn’t have an electric hook up cable. We have since bought one, and it is so useful. We pay a few extra pounds per night (it varies from place to place) and I can charge my chair any time. For a short stay it’s not essential, but when we camp for a week at a time, and I am using my chair a lot, it makes such difference not to be worrying about running out of battery.

I know a lot of people say that you should leave gadgets at home when you camp but for my son, who has autism, having his tablet to listen to familiar music or play the games he plays at home gives him a great deal of comfort when he’s away from home. It also means I can charge my phone, so if I get my wheelchair stuck in some mud (it wouldn’t be the first time!) then I can ring my husband to come to the rescue!

7) Grabber

If you use a grabber at home, take it with you. Reaching down doesn’t get any easier just because it’s outdoors, and any energy you save can be channeled in to having fun!

8) Bed

I admit, I used to have a chuckle to myself when I saw people camping with airbeds, and camp beds. “Use a roll mat!” I thought. Then I reached the point where, when i woke up on the floor, I couldn’t get up without help. If I pull on the tent it’ll rip, and if my husband has gone to refill the water bottles, or is in the shower, then I’ll be staying on that floor. And when I wake up in the morning while camping, I want a cuppa and some bacon ASAP!

Last year I invested in a raised camp bed. The canvas, with a foam roll mat on top, is just the right amount of support for my back. More importantly, I can get up by myself! It’s not as easy as being at home with a bed lever to help, but it’s manageable for a short holiday.

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this just isn’t comfy anymore

9) Head torch

 We’ve all done the dark, quiet walk back to the tent in the evening. You’ve brushed your teeth in the shower block, and you are shivering as you head back to your tent in your pajamas. The problem is, if you use crutches, or a self-propelled wheelchair, it’s almost impossible to move and hold a torch at the same time. I’ve tried clamping it between my knees in my chair, or holding it in my mouth while on crutches, but it’s not the easiest task. The answer is simple, but might make you look a bit silly – a head torch. The kind that has an elasticated strap to go round your head – just don’t forget you’re wearing it when you speak to someone or you will dazzle them!

So, that’s my list of stuff that makes camping that little bit easier for me. You may need other things as well as, or instead of, what I’ve described but perhaps it will give you some inspiration to make camping better for you – or to try it out for the first time.

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cuddling by a campfire

Normacot Post Office

My local post office is something of a conundrum.

It looks to me like they planned to install a ramp but changed tack at the last moment and voted for steps instead. As a result, I can’t buy my own stamps or post my own parcels, because leaving my powerchair on the street and hobbling in is just not an option… unless I don’t want my chair to be there when I get back.

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It would have been quite simple for Royal Mail (or the council?) to put a ramp there, so I plan to contact them and see if I can get the situation improved.

Are there any building near you where access could be easily improved? Let me know!

Stagecoach Bus Service

Let me preface this review by explaining that I had never previously travelled on a bus using my electric wheelchair. It’s not easily lifted if the step is too big, and I worried that I would be left stranded somewhere with no way home!

I recently visited family in the Cotswolds and we used the buses most days. Every Stagecoach bus had a ramp – some built in to the floor and some foldable ramps in the luggage area. Unlike London buses, the ramps are extended manually, so the driver would lower the height of the bus from his cab, then exit the bus to unfold the ramp and put it away again.

Some buses had more room for me to manouevre into the wheelchair bay than others, but I managed not to run anybody’s feet over!

My only slight niggle was that it was awkward to buy a ticket, because I had to be partway down the aisle before the driver could fold the ramp and get back into the cab. Despite this, none of the drivers made me feel as though I was being an inconvenience, in fact most of them were very friendly and made me feel completely comfortable.

Spurred on by this successful experience, I have decided to apply for a bus pass in my area and see how First Midlands buses compare. Wish me luck!

Introduction

Hi folks!

Pull up a chair, get the kettle on, and make yourself comfortable in this little corner of the Internet.

I’m a part time crutch/part time wheelchair user due to Hypermobility Syndrome, which causes pain, fatigue and joint dislocations.

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Having been very fit and sporty until my early twenties, I had no idea whatsoever of the difficulties faced when your mobility is limited.

Suddenly I was thrust into a world where potholes, cobblestones, steps, pavement camber and dropped kerbs were things which significantly affected, and even stunted, my journeys. When walking my dog I had to contend with muddy paths, locked gates and inaccessible stiles. Transport options became limited – my wheelchair doesn’t fit into all cars, a lot of buses still have stairs in order to enter, and the London Underground… Well, that’s a story for another day!

This blog is my attempt to catalogue and review the experiences I have had when exploring my city, my country and the world as a disabled person.