“Let’s celebrate disabled people. We are a diverse, incredible bunch and we deserve to feel worthy.”
Today I want to talk about how society as a whole judges chronically ill and disabled people’s successes, achievements and perceived failures based on ableist, non-disabled standards.
What do I mean by this?: We are only deemed successful if we can work full-time, exercise, drive a car, walk, live independently, go to university, have kids and raise a family. cook, clean and care for ourselves etc.
We all have limitations placed on our lives by our illness or disability, but we also have unique qualities that make us exceptional humans. These ableist benchmarks of success completely ignore this diversity, and undervalue the incredible gifts we have to offer society.
I want to discuss how damaging this narrative is, and urge you to take the time, for Disability Pride Month, to celebrate your achievements and to be proud of your disabled self.
How one insensitive comment triggered this post
I recently had an altercation with someone who has known me for 20 years, and is fully aware of how ill I am and the limitations this ill-health places on my life. Yet they felt the need to make a comment, and judgement.
As many of you are aware I started playing guitar again recently after a 20 year gap. I’m having to learn how to adapt to playing lying down as I’m bedbound, but I’m thoroughly enjoying playing again. The last few months have been particularly hard for me following my marriage break down. I’m now living alone and having to do so much more for myself, as I no longer have my (ex) husband to help care for me, and this has led to many additional challenges and consequently a deterioration in my health.
We were having a relaxed and lighthearted chat about my guitar playing when this person made the following insensitive comment: “Now you just need to sit up in the chair and play”.
They knew perfectly well I cannot sit up – sitting even for two mins causes extreme pain and dizziness, and leaves me suffering for hours, sometimes days. I’ve been like this for over 7 years. Why are people like this? Why should I strive to do something that will severely damage my health when I’m barely coping as it is? Isn’t it better to make the best of how I am, right now?
This one throwaway comment completely ignored the limitations placed on my life by my ill-health and judged my achievements based on what healthy, non-disabled people perceive to be important and an indicator of success. It dismissed all the achievements I’ve made despite the shitstorm that is my life at the moment. It felt like this person was telling me I’ve given up and I’m not trying hard enough. And I got angry.
Ableist standards of success
The reason I have made so many improvements in my physical and mental health over the past few years is because I stopped forcing my body to do stuff that it couldn’t do without severe negative consequences.
Instead of focusing on what society deemed as recovery or being successful as a disabled person, I focused on listening to my body, I focused on nurturing my mind, I focused on acceptance, I focused on finding purpose and joy in the limited life I have been given. I focused on educating myself, on resting, on being kind to my body, I focused on finding goals I could work towards that didn’t cause me to be in a constant state of a crash.
And for this I’m deemed a failure because I haven’t spent the time punishing my body in an attempt to achieve what non-disabled people perceive to be successful.
This is ableist thinking…
If a disabled person uses a wheelchair, society believes their biggest goal should be to one day walk again, and thinks they should spend their time tirelessly pushing towards this achievement irrespective of the cost to their health and happiness.
But the truth is in most cases striving for this only causes pain, frustration, more limitations, loss of independence, and loss of freedom. Isn’t it much more desirable for a disabled person to continue using their wheelchair if it means less pain, less injury, less fatigue, more independence, more fun, more freedom? Why is walking seen as the ultimate goal? Why are wheelchairs seen in such a negative light? Why are wheelchair users seen as failures or weak because they need to use a wheelchair?
The wheel is often cited as the most important invention of all time. It is linked with efficiency, convenience and fun. It’s almost universally seen as a positive edition to daily life. So why is it that when wheels are added to a chair it somehow becomes something negative? Something to be avoided or ashamed of, when the opposite is true? Mobility aids like wheelchairs are a positive and valuable addition to disabled people’s lives, offering independence and freedom.
We, as a society, need to re-evaluate how we measure success and judge self-worth.
In an ideal world…
Obviously in an ideal world I would want to be mobile – of course I want my old life back. But this isn’t an ideal world and no matter how much I try, striving to reach these ableist and unachievable goals (for now) will only cause me harm. I pushed my body for years completely ignoring it’s cries for help, and for mercy. This way of living is what put me in this situation – bedbound and severely ill. I know my body now and I do my best to listen to it. I do not need someone else to come along and criticise how I’m living my life, or to judge what I do, or don’t do, each day to survive.
Please trust, after all these years, I know what’s best for my body.
I would like to pose a question to healthy, non-disabled people;
Would you do something each day that you knew would set off a chain reaction of symptoms that would cause a crash which could last for days or weeks?: Pain, dizziness, exhaustion, palpitations, brain fog… and leave you unable to do vital tasks like eat or sleep? I’m pretty sure the answer would be ‘No’, so please stop forcing this criticism on disabled and chronically ill people everywhere.
We deserve to live in a world where we are never ever pressured to push our bodies in ways that trigger or exacerbate our symptoms.
Let’s celebrate disabled people
Ableism is rife in society and it teaches us that we should be ashamed of being disabled. It instills the notion that we are weak, unworthy, a burden and an inconvenience.
July is Disability Pride Month. So let’s celebrate disabled people. We are a diverse, incredible bunch and we deserve to feel worthy. We do not deserve to be hidden away. We do not deserve to be treated like we are a burden. We do not deserve to be left behind. We deserve nothing but love, access and respect for being such resilient and exceptional humans. We deserve happiness.
With that in mind, I have compiled a list of things I’m proud of, and I urge you to do the same:
- My writing – I wouldn’t be a writer if it wasn’t for my ill-health and disabilities and I’m very proud of my blog
- Giving others a voice – my blog and social media presence allow me to amplify the voices of those who don’t have a platform
- The ME wishes Campaign – I’m particularly proud of how successful this was
- All my awareness campaign work
- I’m kind, supportive, intelligent and resilient
- Coping despite my ill-health and the stress of the last few months
- Living by myself for the first time in 18 years
- Surviving – not giving up although there have been many times I have wanted to
- The positive work I have done to improve my mental health
- Playing guitar again after 20 years – while bedbound
- Being a good friend
- Learning to be kind to myself despite years of feeling unworthy
- Getting better at listening to my body and resting which has led to improved health
- Being an ally to friends within marginalised communities
What are you proud of?
I have forged myself a life within the limited boundaries allowed by my ill-health, and I’m really proud of this. I refuse to let ableist views of success make me feel unworthy or a failure.
Please take a few minutes to write down your achievements and what makes you proud to be you.
Thank you for your support. I look forward to reading your comments.
I reached out to my Twitter friends in preparation for this post and I was overwhelmed by the response. It’s obvious to me that a much bigger discussion is needed around this topic, especially about the unfair judgements healthy, non-disabled people make about those of us living with invisible disabilities or illnesses. Because this deserves more attention, I will write about it in a separate post.
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