Misplaced Inspiration – Being Healthy is HARD

I often discuss the ‘disabled people are inspirational’ issue with friends and family. ‘Inspiration P0rn’.

I am often told I’m inspirational, some times I smile and say thank you while rolling my eyes, sometimes I challenge the person in question and at other times I take it as a compliment.

I could lecture about this for hours, and I have done so in the past, but the whole concept is much better explained by the late, great, Stella Young. So, if you haven’t watched this before – please do so now. If you have watched it before, do so again.

 

Unfortunately, Stella’s dream to live in a world where disability is the norm didn’t come true but we are making progress. (sometimes that progress feels frustratingly slow, but it is still progress). The true irony is that with this talk, Stella became inspirational for so many people!

Anyway, one of the ideas that persists is that disabled people are inspirational. This is in direct opposition to the other stereotype, that disabled people are lazy scroungers. Above the video I told you I often react in one of three ways, fake smile & eye roll, challenge, or genuine appreciation.

Fake Smile is usually reserved for those who see me at my best, lecturing on a stage in front of a room full of people, well-groomed, smiling and confident. These folks (I know it’s not everyone), will see the wheelchair and splints and think “wow she’s so inspirational” but when questioned about it, think that simply because of the chair. The ‘challenge’ I sometimes give to people here is this…

 

“Oh really? What have I inspired you to do?”

 

Often, It doesn’t matter what I talk about, I’m inspirational for just trying. Some people simply cannot imagine being physically impaired, living with pain and still managing to live a life. To these people, me leaving the house is a job well done because being in a wheelchair ‘at my age’ is such a terrible thing to imagine. This, despite the fact that during the presentation I told everyone that wheelchair = freedom.

If, when questioned, I have inspired someone to change the way they work as an Occupational Therapist, to change their outlook on self-care, or they’ve genuinely learnt something about rheumatology… That’s great. Mission accomplished.

The trouble with this is that me on stage is a tiny snapshot of my life. It is me at my best and it is a monumental challenge. A challenge that is rarely understood or acknowledged by the people who think I’m inspirational. The speaking isn’t the challenge it’s everything else. Travelling not only requires days if not weeks of preparation but the assistance of at least one other person and a couple of ‘recovery’ days afterwards.

This is where the surface level inspiration comes to an end.

I highly doubt the chap who delivers my prescription medications thinks I’m inspirational. He’s only ever seen me answer the door in PJs and a dressing down with un-brushed hair and terrible posture. To him the snapshot of my life looks very different. Much less inspirational.

Likewise the delivery people working for Amazon who regularly see me in PJ’s at 2pm probably aren’t that dazzled by my amazing skills either.

The people I really appreciate calling me an inspiration are generally those who also live with or understand the challenges of an uncooperative body. Often, those same people who are called lazy, or scroungers or who feel like they are wasting the time of their own doctors.

I have similar issues with sick kids being called ‘brave’ when being sick is their normal, it’s all they’ve ever known… the parents who have to choose between potentially damaging treatments and watching their kids struggle are the brave ones. Getting on with life when it’s your only choice, isn’t brave or inspirational. It just is.

Living with an uncoperative body is my norm, it’s my only choice.

Within this scale of ‘norm’ there are highs and lows, good times and bad but the general themes of my health are unpredictability, pain and fatigue.

Just because this is my normal, does not make it easy. In order to maximise the normal I’ve had to make sacrifices, a lot of them.

High heels are out even when sitting. Ballet was too dangerous. ‘Garlic Bread’ just isn’t the same when it’s gluten free…and garlic free.

My life is split into manageable chunks, I spend much more time horizontal than I’d like and if I can eat anything off a restaurant set menu I am genuinely thankful. My ‘spare cash’ doesn’t go on shoes and handbags, it goes on kinesiology tape in a new colour and allergy friendly eco-shampoo.

It’s a sad fact of life that being healthy does not come naturally to many people. You have to work at it. Your choices and decisions often impact you in ways you can’t predict. When everything really goes wrong you sometimes have to give up your control and your choices all together. Let the healthcare team take the reins for a while, then gradually put your life back together in it’s new shape.

There are often two routes in being ‘healthy’. One is letting others ‘do’ to you. Eating what you’re told and taking the medications that are recommended. This is often the easier route. Step-by-step. Colour by numbers. Follow the recipe.

The second is what I strive for. The expert patient route. This route gives you back some control and lets you make a few more choices but it’s HARD. You have to be willing to do the research and challenge healthcare professionals. You have to work in partnership with them. To do things with them rather than having things done to you. You have to find the motivation keep going when you can’t see the results yet.

The disabled people who genuinely inspire me are not those on stages in front of crowds. They are the ones who spend years learning to pace themselves. Spend hours online looking for alternative pain management solutions. Those who pick themselves up and try again with a new approach, a new splint or a new doctor. People who struggle and suffer while quietly getting on with their lives.  People who spend extra time online talking to a friend having a tough time. The people who have the confidence to stand up out of a wheelchair and reach the high shelf in a shop despite the odd looks and whispers. Those who take the hard option because it’s better for them in the long run.

These people sometimes do such a good job maximizing their normal that people forget they face any challenges at all. When I work with clients for pain and fatigue management we so often end up discussing the ‘I’m fine, how are you?’ face. There is genuinely a fake smile and bland look designed purely to help people pull off being ‘normal’.

The hardest thing about my life isn’t using a wheelchair. Lecturing a room full of students is 100x easier than cooking a meal, getting out of the bath unaided or even falling asleep at night.

So, the next time you think an amputee athlete, or a wheelchair user giving a talk is inspirational, please spare a moment to reflect on what actually inspires you. What have you been inspired to do? Have you understood their journey? Their message? Or are you just looking for surface level positive feels?

Take another moment to reflect on all of those who are quietly getting on with things away from the public eye. The people who get up and live every single day with or despite their personal challenges. Those are the people who inspire me. They inspired me to write this.

JBOT

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5 thoughts on “Misplaced Inspiration – Being Healthy is HARD

  1. Another thought that I’ve had about disability porn that Stella didn’t address in her talk is that those images and tag lines make some of us feel awful. I’m disabled, but I can’t do anything incredible like run a race or paint beautiful artwork. I’m just trying to live day to day and not feel like crap doing it. And on the flip side of those images are all of the shame photos of people in wheelchairs standing up, or people with invisible disabilities being harassed for parking in the disabled spot. Both of those types of internet memes leave me feeling like I’m not a good disabled person. I can stand up out of my wheelchair. On a good day I can even walk half a kilometer without something falling out of place. But I can’t play wheelchair rugby or do anything well enough to be a paralympian.

  2. that was a great read Jo! loved that you put the focus more on the fact that for many people, their “inspirational actions” are just what they have to do to get on and have some form of a life. I agree with the wheelchair thing to, as you know i haven’t used a chair for as long as you but i know that without it, i wouldn’t be able to do half the stuff i’m doing now.

    And on a personal note, i would just like to say it was you and the chat we had about pacing that inspired me (yes i used it!) to go back to university to finish my occupational therapy degree, it has been a mammoth task and I’ve not quite finished yet, but would like to report i passed my research module and am smashing my role emerging placement! I’m pretty sure had i not found you and talked to you I don’t think i would have summoned the courage to go back, so for that I am truly grateful 🙂

    1. Glad you like! I’m so pleased you’re back at uni! it’s really awsome and the more OTs the better! Well done on getting back to uni and on passing your research module and your placement! I think role-emerging placements are fantastic for OTs. It’s awesome seeing OT’s working in lots of different places.

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