Life can be tough. Sometimes people with disabilities/impairments have to make tough choices and the impact of society can make tough choices even tougher.

Using mobility aids, pacing and pain management strategies often come with judgments and assumptions attached.

Over the last few years, I’ve learnt a lot about myself and I feel like I’ve finally accepted the ‘new me’. I might not be able to hit the gym twice a week and the climbing wall 3 more nights a week but I’m doing more than I was last week. Living in a wonky body has taught me a lot about myself, I’ve learnt to be kinder to myself and to set realistic goals. I’ve learnt that sometimes the harder you push with things the harder you crash.

I’ve also learnt that most of what society thinks about people is wrong.

I have learnt to do what my body needs regardless of what society thinks.

I am often confronted with one such issue around wheelchair use. I use a wheelchair but I can walk. There seems to be some kind of assumption that the ability to walk and needing a wheelchair are mutually exclusive. Couldn’t be further from the truth. I once read an article that estimated 80% of wheelchair users can stand up and walk short distances. There are plenty of reasons for using a wheelchair besides the obvious ones like being paralysed or not having legs. I personally use a wheelchair for pain management, to avoid falling on my face and because I am incapable of multi-tasking while walking or standing…if I’m planning on actually using my brain for anything important I need to be sat down.

I’ve had various responses when I get out my wheelchair and walk around. Usually curiosity which manifests with not-so-subtle staring and whispering. People of the world, if your curiosity is such that you cannot stop staring, just ask. Walk over and ask. It’s just a little less rude than staring and whispering to your equally curious friends. If I’m happy to answer your questions then I will and if I’m not then you can just stay curious. No harm done. I must admit, on more than one occasion my response has just been to stare back until the curious person gets the message.

My age also appears to cause some issues. Apparently people in their 20’s cannot have disabilities/impairment, or if they do have something wrong then they still cannot use blue badge parking bays. I have been stared at, glared at, and more. One especially rude onlooker walked over and looked in the window to check that I had a permit… while I was holding my wheelchair.

My age also seems to dictate the kind of impairment I’m allowed to have. My poor mobility is often assumed to be the result of an accident of some kind. Someone at the swimming pool once asked how long ago my motorcycle accident was.. I was completely bemused by this since I’ve never even been in charge of a motorcycle… then I realised he was talking about my crutches. I explained that actually I had a genetic disorder and we both swam on our way.

My age has caused other issues too.. My balance is pretty rubbish at the best of times and my joints are wonky and my blood pressure is unpredictable so I have a tendency to stagger around when walking..  If I’m out in the evenings bouncers have a tendency to assume I’m fall-down-drunk when actually I’m just fall-down…

The ‘drunk’ assumption is also made when I try to manage my autonomic issues. I often suddenly feel the need to sit or lay down, this can be a little awkward in the centre of town or the middle of a supermarket. I do what I need to but I often get a strange mix of ‘shall I call an ambulance’ and ‘young people these days’. Which of these reactions I get most seems to depend largely on my outfit and the time of day. My autonomic issues can (unfortunately) cause me to slur my speech.. this does nothing to dispel the ‘drunk’ assumption..

For every judgement of my visible issues, my invisible issues get more.

‘I wish I could spend all day in bed’ or ‘You can’t really be in pain all the time’.

I have come to terms with my fatigue, for the most part. Accepting that fatigue is part of my life, does not mean I enjoy living with it.

Bed days are only awesome if you are choosing to be in bed. Being in bed because you physically cannot get up isn’t fun at all.

Pain is also something that I have accepted. Again, I’m not happy about it but I’ve learnt to live with it. Pain is a part of my life… I have learnt to live with, and despite my pain. Just because I’m not sobbing in a corner does not mean I’m ‘feeling better’.

I’ve had a few conversations with ‘normal people’ and I’ve described how I feel most of the time, most of them had no idea from looking at me. I’ve been told I’m amazing for just getting out of bed…

You never know what people feel like on the inside. Living with the pain, the fatigue and the judgement has taught me not to judge others. I’m glad I have the confidence to lay on the floor if that’s what I need to do. It helps me manage my health as best I can. It might lead to judgement but it’s also lead to some interesting discussions with other people in similar situations. A lady once thanked me and mum for giving her the confidence to put her feet up in a hospital waiting room. I’ve been able to help others by being open about my life and I think that’s awesome.

I encourage all of you do what you need to do, who cares if society thinks laying on the floor is odd. Wheelchairs are for anyone who needs them. Going to the gym for just 10 minutes is totally acceptable if you need gentle exercise and don’t want to burn yourself out. Spending a day in bed if you need the rest is totally ok.

Pace, manage your pain, use your mobility aids and do what you can.

As always, questions and comments are welcome.

JBOT