International wheelchair day - if you can afford one!

Happy international wheelchair day!

To be honest I didn't even know there was an international wheelchair day until I saw this post on Facebook.

Zebras on wheels! By Sally Ann Livingston

It resonated with me as it is very similar to my own story.  When I first had difficulty walking the doctors were dismissive and told me to do physio to strengthen my legs so I could continue walking.  I was misdiagnosed with ME at the time and no-one recognised my hypermobility never mind understood how it was affecting me.  I only got a wheelchair after I'd been effectively housebound for 6 months and then it was unsuitable for me.  I couldn't propel it myself so I had to rely on other people pushing it for me.

Getting a wheelchair on the NHS has become increasingly difficult due to lack of funding and an increasing demand.  In some areas if you can stand and walk even one step you won't qualify but that means your world shrinks limited to the distance you can walk.  Many people become housebound and that in itself can cause a deterioration of physical and mental health.  I know, I've been there.  I cannot describe how frustrating it is as a young person having to rely on your parents to push you in a wheelchair so you can get out of the house for a while.

It's easy to tell someone to buy their own wheelchair but they are expensive.  A basic manual wheelchair can cost around £200 and electric wheelchairs cost from £1,000 up to £20,000.  You can't just go to a mobility shop and try different types because the high ticket price and low turnover means they can't afford to keep them in stock but without an assessment you could be making an expensive mistake if the chair isn't right for you.

Mobility comes at a high price for disable people and many people don't appreciate the reality of the struggles we face just to get out of our front doors.

How physio might make me bankrupt

How far can you walk?  One mile?  Three miles?  Five miles?  Let's say you can walk five miles.  A reasonably fit and health person should be able to do that on a good day.

How would you feel if the government took your car away because if you can walk five miles you obviously don't need it.  And by five miles you must mean ten miles because if you can walk five miles you must be able to walk another five miles back again.

That's just crazy!  It would never happen, right?  But that is exactly what's happening to disabled people who claim Personal Independence Payments.

I'm physically disabled.  I have a condition called Hypermobile Ehlers Danlos Syndrome.  Walking is difficult and painful for me and I can only walk a few metres using crutches.  When I go out I have to use a powerchair which I had to pay for myself out of my disability benefits.  I'm not eligible for one from the NHS because I can walk a few metres indoors on crutches and it's not deemed essential for me to be able to move about outdoors.

I do physio every day to try and keep my body strong and maintain what little mobility I have.  My physio suggested I try and walk a little on the pavement outside my house.  I'm determined to be as healthy as I can be but I had to say, no.  Why?  Because I can't afford to do that.

I currently receive Higher Rate Mobility component of Disability Living Allowance but I am due to be migrated to Personal Independence Payment, which has a much stricter eligibility criteria.  The amount of money you get each week depends on how many points you score.  You must get at least 8 points for standard rate and 12 points for enhanced rate.  For people like me with a physical disability this means if I can walk:

• less than 20 metres = Enhanced Rate - £59.75 per week 
• more than 20 metres = Standard Rate - £22.65 per week
• more than 50 metres =  NOTHING.

So if someone sees me walking outside my home I could get reported for benefit fraud and lose the money I use to pay for my powerchair and wheelchair accessible vehicle.  The thought of losing my independence is terrifying and I realised...

I can't afford to try and walk because the government would financially penalise me and I would become housebound.

I know it seems a bit over-dramatic so I tried to think about it logically.  There has to be some kind of criteria for deciding who gets disability benefits.  Could a person be truly independent if they could only walk 60 metres without suffering pain or other difficulties?

I loaded up a route planner and measured how far it is from my house to the various places I need to visit.  I live in the suburbs of a small town.  It is:

• 550m to the bus stop
• 650m to the post box
• 750m to the nearest shop

And of course you have to double those distances because if I walk there I have to walk home again.  Based on a person being able to walk 60 metres, posting a letter would be over 20 times the distance they are capable of walking.  They wouldn't be able to live independently.  They'd need a wheelchair but they would have no means to buy one because they wouldn't qualify for disability benefits or a wheelchair from the NHS.

I don't envy the government.  I would hate to have to decide who qualifies for benefit and who doesn't but these benefits assessments are not fit for purpose and something must change.  Money doesn't always solve problems but the right kind of support is invaluable.