Wheelchair Life – Ignorance, Personal Space Invasion & Damage! – I have been a full-time wheelchair user for approx 18 years now. During this time, I have been sat on, kidnapped in a foreign country, (yes, you read that right) climbed over, all by adults!! As a wheelchair user, forget personal space, you become a public leaning post and you are invisible!
I have an Invacare Spectra XTR2 electric indoor/outdoor wheelchair with tilt/recline. The price of my chair with tilt/recline is approx £5,500. I’m lucky enough to be eligible for an NHS electric wheelchair. (Many disabled people are not and have to purchase their wheelchairs privately). As with everything in life, there are pros & cons when taking either route. I will discuss this later on.
The price of wheelchairs (both manual and electric) can cost well in excess of £10,000. That’s the price of a family car and when the average life span of any wheelchair is 4-5 years, this can be too expensive and unreachable for a lot of disabled people!
The more modifications that are needed, like tilt/recline, elevated footrest, bigger batteries etc. all add to the cost. Recline alone is around £1000 to have put onto a chair. Can you begin to understand why we are so protective over our wheelchairs?
I’m sure most if not all full-time wheelchair users will agree when I say my wheelchair to me is the equivalent of your legs to you! Without my wheelchair, I would not even be able to get out of bed, let alone do anything else! I wouldn’t be able to live my life!
Wheelchairs as a whole can be very boring and clinical looking. Thankfully, manufacturers are becoming more aware that not all disabled people want this. Some of us, like myself, like to pimp our rides (so to speak). Therefore, I “pimp my ride” as shown in the image above. I come up with ideas to dress up my chair and then hubby makes my ideas a reality. I feel, that my wheelchair is an extension of me and my personality, so why shouldn’t I have it portray that?
As my chair is now 5 years old and I’m unsure what chair will be offered to me by the NHS (past experiences have not made me hopeful) I recently went to a wheelchair company to see what was on the market that would suit my needs. I found my perfect chair but it would cost me £10,000. The main things I need on my chair outside of what comes as standard are: electric tilt/recline, swing away joystick and swing away leg rests. Not a lot maybe but the electric recline alone chucks on an extra grand.
While at the showroom, I saw some wicked colourful wheels on a manual wheelchair with various frame colours. When I have to remove my handmade covers and accessories from my chair, I feel like I’m in a completely different chair and it actually feels depressing sitting in it. I feel drab and dreary and can’t wait to get my covers etc back onto my chair!
As I am typing this blog up, I received an appointment to go for a new wheelchair assessment at my wheelchair service, (more on this later) but I just wanted to share that the new chair I will be getting is exactly the same chair I fell in love with at the showroom. Best part? I can change the colour of the shrouds on the chair. I am so excited!
More Than One Way to Get A Chair
To my knowledge, there are a couple of ways to get a manual or electric wheelchair:
- Purchase a brand new chair privately via a showroom
- Buy a new/second-hand chair on places like eBay or Amazon
- Be referred to your local NHS wheelchair service (eligibility required)
- Loan scheme a brand new chair via Motability (eligibility required)
I’ve created a pros & cons file for you to download below if you wish:
Out & About
If I’m going somewhere for the first time, I have to do plenty of research before venturing out. This will include:
- Is your venue/restaurant/pub accessible? Do you have level entry? If steps, how many & how high? (My electric chair can manage a small step). Company websites fail terribly at supplying this sort of information, which then means many phone calls or emails to find this information. (very time-consuming, which in all fairness is totally unnecessary!)
- Do you have a disabled toilet? Will I find it being used as a storage room, (too many are used this way)?
- Can my family sit with me if going to a show, or will we be split up due to only having one carer/PA space?
- Do you have disabled parking?
- Internal steps?
- Width of doorways
The list just goes on and on! The most frustrating thing is when you are told one thing, then arrive and find it’s nothing like what you were told. Most of the time, it means having to either find somewhere else to go or worse, go back home!!! For example. I was going out for a meal with family that came to visit. The venue was told there would be one wheelchair user in our party. When we arrived, the table we were taken to was higher than my head, with tall stools sitting around it!
When I looked funny at the waitress, she had NO IDEA what the issue was. I had to ask her how she thought I would be able to eat a meal at the table. The penny dropped! Thankfully there was another table vacant that was more suited. It’s stupid things like this that make going out anywhere frustrating and embarrassing and make you feel a burden to the people you are out with.
If companies were penalised for this treatment of disabled people, I’m pretty sure things would change very rapidly and drastically. Access would almost be perfect. Other countries can do it, so why not here? I am ashamed of how disabled people are treated in this country, I truly am.
I’ve put metal spikes across the top of my headrest as I’m sick and tired of people who think it’s ok to lean on it!! IT’S NOT!!! (No, it isn’t illegal, I asked a police offer to be sure).
I’ve Scoliosis and suffer from severe back pain a lot of the time. When someone decides to lean on my headrest suddenly, it makes my chair jolt, this makes me jump and jars my back. This causes pain that can last several days for me. So my spikes now prevent this from happening.
Many wheelchairs cost an absolute fortune. Do you really want to be responsible for breaking something and having to pay the cost of repairs which could run into hundreds of pounds? NO? Think before using someone’s chair as a leaning post, shopping trolley or hanger! More importantly, you have no idea what a person’s disability is and how it affects a person, so you could be causing harm to the wheelchair user.
NEVER, EVER just push a wheelchair (while the person is still in the chair) without explicit permission from the wheelchair user themselves. It’s scary, invading personal space and can be dangerous!
I was in Tunisia on holiday with my husband. We visited a local market and were browsing one of the stalls when a complete stranger grabbed my manual wheelchair and started pushing me away. I literally screamed out for hubby but couldn’t see him. I had no idea where I was being taken and I couldn’t see hubby. This terrified me, all sorts were running through my mind at the time.
It turned out, due to the jewellery I was wearing, this man saw this and took me to what I assumed to be his friend’s jewellery shop. Just so I could get away, I ended up buying a bracelet and finally hubby caught up with me and we left.
In my own vehicle, I’m fine. I know my chair is tied down securely and most importantly, safe! My WAV has been made to my requirements. Anywhere else though, is a roll-of-the-dice situation. Let’s take the biggie, air travel!
Airlines, baggage handlers and staff, in general, do not treat our wheelchairs with the respect they deserve! It angers me so much when I hear about another person having their wheelchair damaged or destroyed purely because airlines are ignorant and/or incompetent.
This kind of treatment of our wheelchairs (which is primarily the same as ableds LEGS) is disgusting and definitely puts disabled people off from flying. Maybe this is the airline’s intention!
On average, airlines damage 28 wheelchairs a day in the United States ALONE! Can you imagine how high that number raises worldwide? If airlines broke that many passengers’ legs, there would be uproar and probably no longer be in operation! Why then, is it ok to break our metaphorical legs?
If our chairs are broken, we too are out of action, actually, we are worse off. Most disabled people’s wheelchairs are made to prescription that fits the person using it. To be without our chairs, just doesn’t mean we can no longer enjoy whatever trip we were taking, we are now in severe pain having to use a mainstream non prescription off the shelf wheelchair.
Some wheelchair users rely on headrests, body straps to help posture and head controls so they can move their own chair. To be without these is beyond comprehension! More importantly, for airlines to be allowed to continue this treatment without any repercussions is discrimination and downright disgusting!!