Wheelchair life

Cazbarr - Family sitting on a sofa with an empty wheelchair beside them

Wheelchair Life – Is This A Fate Worse Than Death?

Society tells us that being in a wheelchair is terrible, a fate worse than death! Telling a wheelchair user “how terrible it must be to be stuck in that” or “how they couldn’t/wouldn’t want to be in a wheelchair themselves!” IS NOT COOL!!

Ableds have no idea of what it’s like to be a wheelchair user, so what gives them the right to tell us how awful it is? I’m here to tell you my story of how I became a full-time wheelchair user & why I disagree with the above statements!

How I Became A Full-Time Wheelchair User

Cartoon Cazbar sitting in a wheelchair with tank tyres

I became a full-time wheelchair user roughly 20 years ago. I was born with (Arthrogryposis) and walked using calipers until becoming a full-time wheelchair user. Unknown to me (because my disability is very rare and still is today), Scoliosis can be a side effect of my disability. Scoliosis caused so much pain in my back, it prevented me from walking completely.

My back was getting worse & worse and my ability to walk was becoming more & more difficult. I visited the doctor who referred me to the pain clinic. Which in all honesty, from my own experience and from hearing others, is pretty much a waste of time. It’s like a stopgap so “statistics” look better than they really are. As I got no joy or relief from there, I was referred to Orthopaedics.

It was through them I had facet joint injections in my spine, which only worked for 3 days. Then it was onto radiofrequency facet joint injections but this didn’t work at all.

Since then, the medical profession has seemingly washed its hands off me. They ceased contact with me. No advice on how to deal with the pain outside of taking painkillers.

Fearful

Facing the rest of my life in a wheelchair was daunting & scary. There is no escaping that, no matter how positive of a person you are and I would class myself as a pretty positive person. Nobody wants to be disabled but…..I do believe being born with a disability is easier to deal with than becoming disabled later on in life. I’ve experienced both! I was born with my disability and grew up knowing no different. Later in life, I had my independence taken away from me. I now had something to compare to. I now had to grieve the life/independence I lost.

At this point in time I was 33 years old with a son aged 12. I was used to doing everything for myself and my son. I was terrified as to how I was going to cope in general. How was I going to look after my son? I had no choice but to find other ways of achieving what I could do previously!

I’m not going to tell you life in a wheelchair is wonderful and a bed of roses. It isn’t! But it’s most certainly not a fate worse than death! Yes, you have to be a resilient & determined person. A problem-solver! As life throws many curve balls that we (disabled people) must navigate on a daily basis. Live with the knowledge that in most cases, there is always a solution to these curve balls.

I know it’s hard, but it’s not what you’ve lost that counts, it’s what you have left.

Billy Isle – Amputee & atrificial limb manufacturer

Coping

Wheelchair Life - Is This A Fate Worse Than Death? - Male wheelchair user playing wheelchair basketball.

All in all, I would say it took me around the year mark to finally accept I was now a full-time wheelchair user. Learning how to do simple tasks would make me scream and cry every time! These tasks were now more difficult and took 3 times as long to accomplish. I not only had to learn how to do things from a sitting down position but I had to deal with my poor strength in my arms and hands. This made lifting and opening things difficult and painful. I was also in a manual chair which made self-propelling impossible. I felt useless and a burden. (Even the strongest of us can wonder if it is worth it)……But I can tell you, YES, IT BLOODY WELL IS!!!

Everyday life as a wheelchair user can be difficult when society & infrastructure prevents me from doing what I want but thankfully the good far outweighs the bad. The saying: “I’m only disabled due to societal barriers” is probably one of the truest sayings I’ve ever heard! If I’m visiting a venue and the only entrance is by steps, then I cannot enter. If there was more education & understanding about disabilities, I wouldn’t feel so self-conscious about my physique caused by my weak & miss-shaped bones. (I get extremely embarrassed when I shake hands or have to hand over money to a cashier as people either pull away or let money fall onto the counter).

My husband was a massive help throughout all of this. He would be positive when I wasn’t. Helped me come up with solutions that helped me complete tasks I would struggle with. In fact, he still does today. I have asked him many times to help me come up with a solution to a problem I may have.

Accepting

Being a wheelchair user has not stopped me from doing what I wanted to do. I’ve been to many places and done different things, from, Scuba Diving, a long weekend to Vegas to see Billy Idol in concert, Cruising 3 times with a 4th in the pipeline. All giving me wonderful memories that I can tell to my 4 grandchildren (at present lol). More planning is needed of course but it is so worth it!

I had to learn how to redo many things, including the simplest of things like making a cup of tea to getting dressed, all from a sitting down position. I would go to stand up and suddenly realise that I couldn’t. This tortured me every time and made me so frustrated and angry. I would take it out on anyone close to me at the time. Understanding this is all quite normal and part of the healing process is where more understanding needs to come into play. I know this helps as I (unknowingly) needed to know this after my heart attack. Just knowing other people feel the same way and that what you’re experiencing is normal can be half the battle.

Friends and family (and ourselves) forget we are grieving the loss of our old life, this grief is just like any other grief. It takes time to deal with this grief. You will go through many emotions on a daily basis. With a positive attitude and time, you WILL get there. You will learn to adapt to your new way of life!

The longer I was a wheelchair user with limited strength and grip, the more help I needed. I needed help with showering, dressing & cooking. Sitting down made tasks much harder for me than they were when I was able to stand.

Life Changes

Being a wheelchair user means (as I’ve said previously) you must learn to do things differently than you once did. This can also mean adapting your home. Unfortunately, if you own your own home, there is little to no help that you can get financially, or from your council. You have to do everything yourself. If you are a council or housing association tenant, they should be able to help you.

Your first port of call though should be to get yourself an OT (Occupational Therapist). Occupational therapy aims to improve your ability to do everyday tasks if you’re having difficulties. You can get occupational therapy free through the NHS or social services, depending on your situation. You can:

You can also pay for it yourself. The Royal College of Occupational Therapists lists qualified and registered occupational therapists.

How Can An OT Help

Occupational therapy can help you with practical tasks if you:

  • are physically disabled
  • are recovering from an illness or operation
  • have learning disabilities
  • have mental health problems
  • are getting older

Occupational therapists work with people of all ages and can look at all aspects of daily life in your home, school or workplace. They look at activities you find difficult and see if there’s another way you can do them.

Source: NHS UK

Benefits

I am in no way gonna enter the minefield of DWP benefits but, you may well be entitled to some benefits. These could include, PIP, ESA, Universal Credit and if you have someone who helps/cares for you on a daily basis, they may be entitled to a carer’s allowance. The best people to talk to is Jobcentre Plus where they have all the up-to-date information.

Don’t miss out on what you are entitled to, JCP will not voluntarily tell you what you can claim for. Speak to other disabled people to find out what other benefits there might be. Another good source of information is the CAB.

Body & Mind

The words mental health on top of blank scrabble tiles.

Some of you reading this are thinking, I could never do that! I couldn’t cope! Let me tell you this, at first, yes it’s extremely hard to accept you need help after being so independent, I know! But once you get past this stage and you will, it does get easier, to the point of it becomes normal every day.

Mindset is paramount though, having a positive mental attitude really is the key to your coping and accepting. Another extremely important thing is to have supportive and understanding people in your life. This includes family. I was very fortunate to have family around me that were supportive and understanding. Something else that is crucial, counselling and/or supportive groups. I was sceptical until my heart attack and I joined a counselling group. This helped me understand that my feelings and attitude were very normal.

You either get better or you get bitter. It’s simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you!

Josh Shipp

Don’t let negativity in your life wherever possible, especially in your transition stages. It will hold your progress back!

My Final Thoughts

I’m living my life no differently than anyone else. I have a roof over my head, and food on the table that I am extremely grateful for. My family of two wonderful grown-up kids. I go visiting my grandkids, I holiday, I have friends, I socialise and I have sex! Would I say this is a fate worse than death? HELL NO!! Even with the trials & tribulations of daily life and some of society’s attitudes…..I seriously wouldn’t change a thing.

Links

If you would like to work with me don’t hesitate to Contact Me.  Feel free to leave a comment below.

Cartoon strip illustrating a person becoming a full=time wheelchair user
My pimped up wheelchair with red cushion covers

Wheelchair Life – Ignorance, Personal Space Invasion & Damage!

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!

My Wheelchair

Wheelchair Life - Ignorance, Personal Space Invasion & Damage! - My wheelchair in red cushion covers with black lace trim

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!

Boring!

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.

Personal Space

My wheelchair headrest with silver spikes across the top

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!

Holiday Trauma

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.

Travelling

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!

Wheelchair Damage
Broken wheelchair sat next to an aeroplane.

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!!

Links

What To Do If Your Wheelchair Is Damaged

CAA – Travelling with mobility and medical equipment

Related Blogs

WAV – What Is It And Why has It Improved My Independence?

Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination?

If you would like to work with me don’t hesitate to Contact Me.  Feel free to leave a comment below.

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