Why disabled people need a different filter for self-improvement culture
There is a great deal of advice online these days. Some of this advice is absolutely excellent. Some of it has helped me severly improve my life.
And some of it, while well-intentioned-
becomes surprisingly harmful when applied to disabled people.
Recently, I came across a very sucessful entrepeneur argue that people should take complete and full responsibility for the trajectory of their lives.
Now, I understood what she meant by her statement. In many ways, I even agreed with her.
Personal responsibility matters!
But as I listened to the video, I found myself asking a few very simple questions;
How exactly am I responsible for being born with epilepsy? And –
What am I supposed to do about it?
Because, there is a vast difference between taking responsibility and control over what you do in your life, and taking responsibility for things you never controlled in the first place.
And I think many disabled people spend years carrying the guilt of that distinction.
Because,
Responsibility is not the same thing as control.
In fact, one of the most important lessons I have learned as a disabled adult is that responsibility and control are not the same thing.
– I can take responsibility for taking my medication at the apropriate times.
– I can take responsibility for laying off caffeine, alcohol and all other things that negatively affect my disagnosis.
– I can take responsibility for exersizing when my body allows it, eat well by making sure my money prioritize it, and take responsibility for how I talk to myself, how I spend my time – and generally stay on top of my health; whether physical, dental, mental or emotional.
But i cannot take responsibility for being born with epilepsy.
That is beyond my control.
I cannot take responsibility for having seizures daily, even after doing everything I possibly can to avoid them.
And when they do appear, I cannot take responsibility for getting a concussion,
for having to avoid workouts or needing longer hours of sleep, leading to not being able to wake up as early as is recommended.
And this distinction matters.
Because, many forms of self-improvement advice quietly blurs the line between what we influence and what we control.
And once those things become confused, disabled people often end up blaming themselves for circumstances they never had any control over to begin with.
Things that were never theirs to choose.
«You can do anything if you want it badly enough»
This is probably one of the most common pieces of motivational advice in the world.
And it is also one of the least accurate.
To use an example from my own life: I cannot drive a car.
This is not because I don’t want it badly enough. Nor is it because I can’t find a car to drive if needed.
No,
I cannot drive a car, because Norwegian law requires people with epilepsy to be seizure-free for at least a year, before driving. This law has changed significantly througout my life; from 3 years to 2 – and now 1. But I have never been able to reach the appropriate requirement. Which meant that I have not been able – (or allowed!) to practice driving, thus have not been able – (or allowed!) to take the test for a licence.
And no amount of motivation changes that reality for me.
I cannot simply change my seizures on bare belief alone.
And I cannot simply change the law purely by wishing it.
(And in all honesty, I would not want to either, as I would find it irresponsible!)
In a similar fashion, a paralyzed wheelchair user cannot simply decide to walk.
A blind person cannot simply decide to see.
And, a person with chronic fatigue cannot simply decide to have more energy.
We can only work with our current circumstances;
by adapting, learning and growing as people.
But we cannot simply wish biological realities out of existence.
And truthfully,
there is something strangely liberating about accepting that.
Because, once we stop fighting reality, we can begin building lives that actually fit it.
Now I still have high hopes for disabled people in the future. Hopes of high employment, through changing the current system to one more sustainable for all people.
Hopes of hight accessibility to nessesary treatment, by lowering cost, and building knowledge.
Hopes of low stigma, by making medical diagnoses more open to talk about, and hopes of a world where everyone can live, withouth feeling at fault for being born disabled.
So,
here is a list of advice, disabled people should probably leave behind…
There are a few pieces of popular advice that I think disabled people should approach with caution.
X «Your life is entirely your responsibility.»
This is partly true, but ONLY partly.
Genetics matter. Health matter – and access to healthcare matters. Economics matter, discrimination matters. And – the country you were born in matters.
Pretending otherwise is denial of reality; and no amount of empowerment speech is going to change that reality.
X «Never depend on anyone»
Humans are social creatures. And every successful person depends on someone;
Family
Friends
Partners
Parents
Assistents
Coworkers
Teachers
Communities
Doctors
Support workers.
The myth of complete independence is exactly that – a myth.
X «If you’re not succeeding, you’re making excuses.»
Sometimes people are making excuses, there’s no going around that.
Other times however, they are facing genuine barriers that they cannot cross.
Learning the difference between which is what, is a form of wisdom not easy to find.
On the other hand,
here is a list of advice worth keeping!
Fortunately, not all self-improvement advice falls apart under scrutiny.
Some of it becomes even more valuable when viewed through a disabled lens.
V: Build daily agency
Agency is not about controlling everything from hell to heaven. It’s about controlling something. It can be relatively easy things, like; making your bed, taking your medication, answering your emails or keeping track of your finances.
It can be about going to the gym, or going for a walk, or cleaning and organizing parts of your area.
Personally, my current daily agency is very simple;
– 1 task of body movement: like stretching, going for a walk, or working out with a physiotheraphist.
– 1 task of contribution to the home: cleaning, grocery shopping, making dinner or being an emotional support for the rest of my family.
– 1 task of mind growth: reading, writing, learning or slowly building a skill.
– 1 task of future-improvement: writing a blog, working on my newsletter, a future charity organization, taking pictures or videos, or slowly making my books.
Whether big or small, these tasks of daily agency do not cure my disability.
But they have four very important focus-points, that help build confidence, self-esteem, self respect, and momentum over time.
V: Focus on what you can influence
Instead of going all in at once, find something. Just something that a simple change in your daily system, weekly habits or yearly goals can influence for the better. You do not need complete controll to make progress in life, you just need a place to begin.
V: Build interdependence instead of chasing independence
Out if all the lessons I have learned in my early adulthood, this is probably the most important one;
The goal is not independence for the sake of independence.
The goal is a meaningful life.
And sometimes that includes help. Sometimes it includes support. Sometimes it includes accomodations. And there should be no shame in that.
In fact, most societies have always depended on people helping one another.
The African proverb «It takes a village» does not come from nothing.
V: Define contribution more broadly
I believe one of the greatest failures of modern society is how narrowly it defines value.
Because, contribution should not be limited to paid employment, as many people contribute through a variety of different ways;
– caregiving
– volunteering
– art
– mentoring
– friendships
– emotional support
– community building
– and countless other forms of labour that rarely appear on a payslip, yet is completely needed in any society.
«Alone we can do so little; together we can do so much.»
– Helen Keller
I think disabled people often understand this much better than most.
Because, our lives often forces us to recognize something many people spend years trying to avoid:
No one succeeds entirely alone
«Do not judge me by my successes, judge me by how many times I fell down and got back up again.»
– Nelson Mandela
This quote resonates with me far more than most productivity sloagans ever could.
Because resilience is not the absence of limitation.
It is learning how to continue despite of it.
What the research says
Psychologists, such as Edward Deci and Richard Ryan have spent decades studying what helps people thrive.
Their Self-Determination Theory suggests that well-being is strongly linked to three core needs;
-autonomy
– competence
– and relatedness
To put it in other words, people flourish not because they work harder than everyone else, but because they have meaningful choices, opportunities to succeed, and supportive relationships.
I personally believe that is a far more nuanced picture than the idea that success is purely an individual responsibility.
And honestly, feels much closer to reality.
By: Silje Elsrud Yttervik
The truth I keep returning to
Now, of course, before someone tries to take a whip at me, as I mentioned in the beginning of this post; personal responsibility is important.
And the disabled people that I know, are some of the most responsible people I have ever met.
Because, we have to be…
We track medications, we manage symptoms, we attent various appointments, and navigate systemt.
We adapt constantly!
But you cannot know what you cannot get to know – thus to us, a lecture about personal responsibility tends to fall flat.
What we need, instead, is advice that recognizes reality.
Advice that understands the difference between responsibility and blame.
And this is huge – as good advice helps us build lives within our limitations, instead of pretending those limitations do not exist.
This does not mean to never test your own limitations; we all should!
But in a safe and sustainable matter.
Because, for us, going too far too quick, very often lands us in a hospital bed,
considerably worse off then when we started.
I surpassed my limits once in my early 20’s, and ended up with a burnout, worse seizures and a massive fatigue – that I have still not recovered from almost 10 years later…
Good advice – real good advice should make people stronger.
It should not make them feel guilty for things they’ve never had the power to control.
__________________________________________
A task for you, reader…
Today, make two lists:
On the first, write down three things you genuinely have influence over.
On the second, write down three things you have been unfairly blaming yourself for.
Then compare them.
You may discover that one of the heaviest things you carry were never yours to carry in the first place.
– Silje