Being a part-time wheelchair user

This blog post has been inspired by this great mumsnet article (not a place I frequent usually) about how a wheelchair user feels she has to ‘perform’ her disability.

When getting out of my wheelchair to climb into the car I have two signature moves. One is to stand up and to loudly declare to all who can hear “it’s a miracle!” The other is to steer my chair level with the seat and move my bum over as if my legs are paralysed. Which one I choose depends whether I’m in a belligerent mood, or a vulnerable one.

I can stand, just not for long, and I can walk, just not very far. I need to use my wheelchair in order to have a hope of going anywhere beyond my own home. Limited as my mobility is, though, I am still made to feel like a con artist for using a wheelchair. You see, society says that to use a wheelchair you must have paralysis. The only exceptions to this rule are people with broken limbs and the elderly. The movement of limbs is a way to sort the inspirational cripple from the thieving scrounger. 

I completely understand this and it is why I have made the decision to say I am a part-time wheelchair user in my social media profiles – to help raise awareness. Not all wheelchair users are paralysed. I can walk short distances on hard surfaces, however it is hard going, I walk like I am drunk, I am very slow and also my legs can give way underneath me (even with crutches) – increasing the potential for further damage to my body, which at the least will be very slow healing and worst could easily result in permanent damage. It is not very practical at all, however I try to do it for ten minutes each day, partly as it is important to get regular movement into my day and partly to help slow further deterioration.

I also get immense joy from walking my dog, but I have to drive him to somewhere were there is soft ground and I walk with two hiking poles and I take it easy. At the moment the distance that I can walk is slowly increasing, at Christmas I could just about make it to the first bench and then have to sit for half an hour while I watch my dog run around and then stagger back again. That has very gradually increased a little bit at a time, but my rate of progress is nowhere near what it used to be, and I can just about manage half an hour. Slowly. This may increase over time, or it may stay the same, or get worse. Going into the woods is also a form of therapy for me, it really feeds my soul to be in the countryside plus seeing my dog bounce and run around always makes me laugh.

Both of these, plus the daily yoga and swimming as much as I can is both physiotherapy -trying to keep as much movement, fitness and ability in my body as I can. However it comes at a price – they all leave me little muscular strength to walk for the rest of the day, plus of course I can only ever walk slowly, drunkenly with a risk of falling at the best of times.

So I use a wheelchair for everything else. It means that I can go out without fear of collapse. It means I look more professional. Also walking on hard surfaces takes up a huge amount of mental energy just to stay upright, which means I am not completely focused on the work that I need to do afterwards. But yes, I can put my wheelchair in the car and then walk, albeit unsteadily, to the front. It means I can wheel up to the poolside and then walk the few steps into the pool. Which causes people to really stare at me, which I hate. Do people realise how much emtional strength it takes to sit in a wheelchair in a swimming costume (which let’s face it is not the most flattering of positions) and then to have them stare at me, or even worse stare and me and not move out of the way of the chair. It is horrible.

And I am really worried that with all the media rhetoric about ‘benefit scroungers’ that people will start giving me abuse about the fact that some days I can walk out of the house the few steps to the car looking completely normal, sometimes wheeling my chair to the car (I use it as walking frame) and sometimes using crutches or even just a stick on good days.

The other day at yoga a woman gave me a really evil stare after I staggered out of the class on my crutches, having a really tough time of it (sometimes I think it would be easier to wheel into yoga as well). But of course she sees me doing great yoga poses and doesn’t realise that:
a) I have been practising yoga on and off for 20 years now
b) I have a daily yoga practice as part of staying well and
c) the reason why I can do yoga poses so well is the exact same reason I can’t walk properly – my collagen is faulty, so I am really flexible.

She also probably doesn’t see me not doing some poses as I know they will make it even harder to walk (pidgeon for more than a few minutes), or sitting down if the teacher is demonstrating. Standing upright in asanas takes a huge amount of focus, mental and physical energy. She probably just sees someone who she thinks is a benefit fraud, because how can I do yoga and need crutches? She probably doesn’t know about the paralysed yoga teacher Matthew Sanford or how yoga increases core strength – vital for me to stay well. Or of course she might have been thinking about the huge mess at home that she needed to tidy up for all I know. A mindfulness based thought process would not attach meaning to her look, but I am human and it is something I worry about.

I use a wheelchair to get into band because otherwise I will hurt my hand on my crutches, or use up so much energy in getting there that I wouldn’t be able to play afterwards. It is hard work playing in a band, both physically and mentally.

So yes, I use a wheelchair and I can swim, do yoga and walk my dog on soft ground. Some days I will lurch about on crutches, other days I can walk the few steps to my car fine. But if I am out for any length of time (more than 5 minutes) I will use my wheelchair. So therefore I am a part time wheelchair user.

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18 Comments

  1. Well, you either live in a much suckier place than I do or I am too daft to notice.

    A few years back there were all sorts of rude people who would behave much as you describe about handicapped parking spaces. The best advice I heard someone give is to respond to such ignorance by saying, Yeah, it is really hard when people judge me because my disability seems invisible, but I am so grateful to have the ability to get around as much as I can, and these convenient parking spaces really help me to be as independent as possible on the days when I feel up to getting out.

    To be honest, the worst offending and judging people would most likely not understand or be education by the information being offered to them. The lack of compassion for people who are differently abled can be stunning. Selfish and entitled people will continue to be so.

  2. I suspect I am paranoid as much as anything else!

    You are right, selfish and entitled people will always continue to be so, no matter what we do or say. So ignoring them is the way to go. I just feel like I need to justify myself all the time

    Jen

  3. I don’t have the wheelchair, yet (scooter more my choice if..and when) but otherwise I could have written this. Nail hammer. I am out very little, in nature, as you also so enjoy, and then come home and collapse. One “thing” a day. The public only sees me on that short, rest punctuated walk. The people who chip away at my soul are, unfortunately, family. Those who have actually taken pix of me walking, without my knowledge or permission, to accompany their scathing “see, she can walk it’s all a bit pity party” proofs of my criminality at family gatherings.

    The medical profession. Don’t get me started. I ignore them now. I’m old enough I know more about this than they do. And funny thing, those walks, and rests, and the pacing? That’s pain control. They just don’t get it. So why should I contribute to their Bahama cruises?

    Thanks for setting it out, and I hope to read more.

  4. wow that sounds dreadful, I am lucky my family is supportive, my husband especially. I am sorry things are so difficult for you. At least here we have the NHS to support us!

    Also I am getting a lot better, so I worry even more when I use my wheelchair as people will now see me out and about for a 40min wakl. But that is a controlled walk, here I know where I am going and where all the resting points are. Very different to being out all day when I have no idea where I will be able to sit and rest.

    My wheelchair is also a pacing tool, so I will be able to go out for the day and not collapse. Again a difficult thing for people to understand

  5. Thanks for this. I have EDS and use crutches. I work fUlltime and manage not to use the crutches at work. I can’t walk very far.and things seem to be going downhill. At the moment after talking with my pain psychologist I am considering using a wheelchair to help for days out. I spend weekends mostly at home. If we visit anywhere I am then exhausted. If we went to a city I just cannot do it or if I managed to for a short time it would take me a few days to get over it. We agreed it would improve my quality of life and pacing to help exhaustion. It was good to read your article as there is still so much ignorance and in a way I feel guilty too because I am not paralysed or completely disabled but it would improve my quality of life for me and my family, just as wearing a pair of glasses would !! So thank you

  6. Hello, thanks for commenting.

    Yes, having a wheelchair for trips was the first way that I started using a chair, and I really love my new lightweight chair. If you are interested in my story of how I decided and then got my wheelchair you can find that here http://www.jenfarrant.com/the-fight-for-a-wheelchair-part-1/

    I found using crutches to be exhuasting and actually I prefer to use a stick or a wheelchair as I felt the crutches actually made things a lot harder for me.

    OH and the guilt – yes! I know I have it too, especially as my walking in improving again. BUT walking takes a lot of physical energy and brain power and I can’t run a workshop, attend an all day event and walk around, it is too exhausting.

    I have recently started to walk into my band practice, but I find the chairs are so uncomfortable and so un-supportive that it is a lot more exhausting to do that then to use my wheelchair (which is designed specifically for me), even though it is a lot less hassle to just walk in.

    My chair also means I can go to all day conferences or meetings in London without having to spend two days recovering.

    I am glad you found this post helpful! Please do share with others

  7. I have an NHS wheelchair which I am very thankful for but it is heavy to self-propel and to lift in and out of my car. I would be really interested to know what type of wheelchair you have as you describe it as very lightwight and designed for you.

  8. I’m a part-time wheelchair user too. I don’t use it very often, usually I do the morning school run on a mobility scooter (I don’t drive, except on the pavement 😉 and can usually manage to walk the afternoon with a stick.
    I have Functional Neurological Disorder.

    Chronic Fatigue is one of the main things that disables me. The noise, busyness and artificial lights in big supermarkets cause the cog-fog to roll in and involuntary movements to begin, not to mention dizziness.

    When I borrowed a supermarket wheelchair instead of clinging onto a trolley in fear of collapse (both mental and physical) suddenly I felt more like my old, healthier self again! Choosing to use a wheelchair, I regain the power of making decisions (essential when shopping!) and have more energy later on.

    I’ll be taking it on holiday for the first time this summer (the scooter isn’t portable). I made this choice as I was doubtful the NHS would provide, in light of my poorly understood diagnosis.

  9. Ah, cog-fog, I’ve not heard that before, but I am familiar with it!

    It is hard trying to get what you need, I have a friend with the same condition and all of her medical practioners say she needs an electric wheelchair, but she doesn’t qualify under NHS criteria. It is deeply frustrating.

    I am finding that using my wheelchair means I don’t get as tired and I can use my energy for what helps to improve it – swimming and walking the dog mainly. It is difficult to make the call, particually as I am so independent and don’t want to use my chair, but I am coming to accept that it really does help me and make a big difference to my life

  10. Hi I have just read this blog https://advancedspinalmanagement.wordpress.com it is amazing call out not only about wheelchairs and societies views and now suffering occurs unnecessarily.

    I have needed a wheelchair for a year and today I have made a decision to start using one due to you blog and the above blog.

    I feel so happy.

  11. Thank you so much for this blogpost. I have Ehlers-Danlos and got my first wheelchair today. I’m hoping it will give me some quality of life back. I use a stick, or crutches but its just so exhausting and painful that my world has shrunk to work and spending all weekend in bed to recover so I can go to work! I miss having a social life, and your talk about using a wheelchair for a lot of the time to help with being able to do more is really helpful.

  12. This was so great to read! I have Chronic Lyme Disease, and have been unable to do many daily activities for some time now. I finally (a few days ago) realized that a wheelchair was a perfect solution, for although I will undoubtedly still have extreme mental fatigue and common sensory overload, I can begin to do a lot of things I enjoy again, because walking for more than a few minutes at a time often pushes me over the edge into complete misery due to fatigue, dizziness, and feeling disturbingly out of it along with sensory overload.
    It took me so long to accept that I can use a wheelchair do to the fact that I have no problem walking short distances, and due to mental health problems, I have a tendency to feel incredibly guilty over things and become obsessive questioning myself whether what I’m doing is ‘okay’. Now that I have one though, I can feel my ‘horizons expanding’ if you will. I am sure I will have to deal with unpleasant people who have seen me walk, but this article is helping me be more confident.

    Thank you so very much for writing this.
    -Cat

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