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
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
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:
- Speak to a GP about a referral
- Search for your local council to ask if you can get occupational therapy
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
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
- TAG – The Arthrogryposis Group – The Arthrogryposis Group
- Scope
- The British Association for Counselling and Psychotherapy
- Therapy in London
- NHS UK
- CAB
- Jobcentre Plus
If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.
About Cazbarr
Cazbarr is a full-time wheelchair user, who was born with a disability called Arthrogryposis. Primarily she blogs about her disability, her experiences holidaying as a full-time wheelchair user, along with honest products & service reviews.
If you would like to work with Cazbarr, just drop her line on the Contact page.
