Before becoming chronically ill myself, I had no idea what ableism was. When becoming more outspoken about my condition and my experiences, I stumbled upon this word and realized that a lot of the things I had experienced, fell under the category of ableism. And along the way I realized, that I had internalized some of these things myself and that they were the root for a lot of my insecurities and distress.
But what is ableism?
When you google the word, you find this definition:
“Ableism is discrimination and social prejudice against people with disabilities and/or people who are perceived to have disabilities. Ableism characterizes persons who are defined by their disabilities as inferior to the non-disabled.”
There is also this definition by stopableism.org that says:
An ableist society is said to be one that treats non-disabled individuals as the standard of ‘normal living’, which results in public and private places and services, education, and social work that are built to serve 'standard' people, thereby inherently excluding those with various disabilities.”
In my experience, ableism can have many forms.
There is structural ableism, where people are structurally and systematically discriminated because of their disability or illness, for example in universities or work places. Many times, there is a lack of accommodations, an emphasis on attendance (or even punishment for sick days), not to mention that disabled people often struggle to be employed in the first place. This often leads to precarious financial situations, while getting any disability benefits is extremely hard and often humiliating, and life with illness and disability can be very expensive. People often report that they feel let down, when after years of paying their taxes and contributing to the social system, once they are in a situation where they need help, they face disbelief, medical gaslighting, humiliation and are far from getting any of the help that they need.
I never realized these things before becoming ill, but after I got diagnosed I became aware, how many barriers people with disabilities have to face in their everyday life and how much more difficult life becomes. Growing up, I thought that if I ever got ill, people would help me until I’m healthy again. The reality is much more complicated, and filled with bureaucracy and invisible barriers.
Apart from structural ableism, there is ableism on an individual level. People may suddenly treat you differently. They may doubt you, or treat you as if you are lazy, or attention seeking.
You hear remarks like “Oh, how nice that must be, I wish I could stay at home all day!”, or “Well, I’m tired too sometimes but I go to work anyway”, or, “You don’t actually need this mobility aid. If you didn’t use it, your body wouldn’t get used to it and you would do better”, or, “You just need to get out more, it’s not that bad, you’re just stressed!” You notice that you are being judged and looked down upon by people who (luckily for them) have no idea how it is to be sick or disabled.
Experiencing ableism anywhere can be difficult, be it from an employer, a professor, a medical professional or a friend or family member. And it may take a while to recognize it for what it is, because often it can be very subtle.
What is internalized ableism?
We all grow up in a world, where certain values are taught. We are socialized in a capitalistic system, that praises people who are productive, diligent and never complain. We are taught to give, but not to take. We are taught that we all need to function well in order to be worthy, and that those people who take something out of that system are lazy, and that they cost us all money and those people are looked down upon. You learn, that you don’t want to be a part of that category. You want to be one of the “good ones”.
By describing those who are in need of help from the system as “lazy” and as failures on a personal level, society escapes its responsibility.
If you become ill or disabled at a certain point in your life, you may suddenly find yourself in a situation where you are in need of help. You are in a situation where you are unable to be productive, unable to work, and that you need help to survive. Suddenly you are not the “giver”, but the “taker”. Being in a position in need is very uncomfortable for most people, and in many cases connected to shame.
If you lived your whole life building your self-worth only on the things you can produce, on your career and your accomplishments, you will have a hard time if this career became unattainable to you because of an illness or a disability. Many people make the experience, that they had to learn to rebuild their self-worth on other things.
A new self-worth
We learn, that a “good” and “successful” person is someone who is independent, self-sufficient and is not in need of help. Someone who doesn’t impose on others, someone who gives more than they take. If you are suddenly in need of help, you may feel bad about it. Disability means, in many cases, that you are dependent on others, may that be from a financial aspect, or day to day tasks. Especially when you acquire a disability and there are things you suddenly cannot do anymore without help, that can feel weird and humiliating.
At some point, we may realize that we often feel bad about ourselves, and that those feelings of guilt and shame are connected to our inner ableism.
We need to learn, that even though we are less independent and in need of help, we are still worthy and deserving of respect and dignity.
So, what can we do to overcome this internalized ableism?
1. Know, that it’s an ongoing process
You won’t be able to overcome these feelings overnight. Maybe you won’t ever completely overcome them, and that’s ok. As with your self-confidence and your mental health, there will always be good days, and then there will be bad days. Don’t expect yourself to be perfect. There will be moments where it’s easier, and there will be moments where it’s harder. And that’s ok. Overcoming your internalized ableism is a part of healing, and healing is never linear. There will be ups and downs. Learn to be mindful about it, when there’s a moment when you catch your inner ableism, don’t be hard on yourself. Be patient. And with time, you may recognize some of your thought patterns and understand your own feelings better.
2. Stop comparing yourself to others.
We always tend to compare ourselves to others and admire those who can get lots of things done, and think: “they are so much better than me”. But we can’t forget that every person is individual and that comparing ourselves to someone who is healthy and able-bodied maybe isn’t that good for our mental health.
Of course, someone who is fit and healthy and has a lot more energy can do more than me, someone who is chronically ill and severely fatigued. That doesn’t make my accomplishments any less valuable, on the contrary! We all are different and we are good at different things in life. And that is a good thing! Imagine how boring it would be if we were all the same, and all good at the same things. Being different is good, let’s learn to embrace that.
3. Learn to love yourself for who you are, not what you do
Your worth is not connected to what you can do, but who you are. Our ability to be productive may fluctuate in life, but our worth does not. And sometimes we can give more, sometimes we can give less. That’s part of being alive! And other people are not more worthy than you, just because right now they can do more.
We all have different things to give, and one isn’t’ inherently better than the other. We may grow up thinking, that only those things are valuable that can be monetized and capitalized. We admire people who have a good job, have accomplished a lot in their career and make lots of money with what they do. But some things in life are just as valuable, or even more valuable, apart from how much money that can make. If you are a good listener, someone who can make other people laugh, someone who creates art, someone who uplifts others: you are valuable. There is no need to think less of yourself, just because you can’t accomplish something, that someone else can. You are you, and you are good the way you are. And you are allowed to remind yourself of that.
4. Celebrate your small wins
In our capitalistic society, we learn to celebrate the big things in life, and everything else is taken for granted. We celebrate our graduation, getting a promotion, getting married or other important life events. But all the other stuff that is part of life too, should not be taken for granted!
If you struggle a lot with your energy, and you manage to cook a meal all by yourself and keep yourself fed, or keep your place in order: that is a great accomplishment. You are allowed to pat yourself on the back. If you struggle with depression and you manage to make it out of bed: you are allowed to be proud of that. We are allowed to celebrate our small wins and be proud of things that may be small for other people, but a big deal for us!
5. Surround yourself with people who uplift you
Learning to love yourself may be difficult as it is, but it is nearly impossible when there are people in your life who tear you down. It is easier said than done, I know, but believe me: those who make you feel bad about yourself do not deserve a place in your life. You are allowed to kick toxic people out of your life. If that is not completely possible (i.e. family): set very strong boundaries. You deserve to have people around you who make you feel good about yourself, who really listen and support you, no matter what. A real friend will never make you fell lesser-than. They will make you feel equal, loved and appreciated. A good friend doesn’t look away when a friend is in need, they will offer you their support and they won’t mind it. And if you ever feel guilty about needing help, ask yourself this: would you do the same for your friend? The answer is probably yes, and in that case, there is no need to feel any guilt or shame.
I also have to mention that online communities can be great, and I have learned a lot about ableism from people I have met online. Maybe you don’t know anyone in your personal life who is disabled too, that’s why online communities can be really great to find people who “get” you and don’t judge you.
If you want to educate other people in your life about ableism and how they can be a better ally: check out this article: How to be an ally for disabled people
6. Practice positive self-talk
Have you ever noticed how you talk to yourself? How you treat yourself in your thoughts?
We often learn to be very self-critical, to be perfectionistic and only be happy with ourselves if we do everything right. These thoughts my sound like this: “I did it wrong again. I’m so stupid” or “I can never do anything right! Everyone else is better than me” or “I need to function better”.
Ask yourself this: if a friend makes a mistake or does something imperfectly: what would you say to them? You may say something like “Don’t worry about it, you gave your best!”, or “Don’t beat yourself up over it, you did well!” or “It’s ok if you need to take time for yourself, I want you to be healthy and happy!” This is the way you should talk to yourself too: talk to yourself the way you would talk to your best friend. Positive self-talk has nothing to do with toxic positivity or forcing yourself to be positive when you’re not: it is about being uplifting and supportive to yourself, in your own thoughts.
When you actively practice this, you may notice, that you become more patient and forgiving with yourself. If you want to improve on your self-love, this is a great way to do it!
7. Therapy!
As I’ve mentioned in the past: therapy has helped me a lot along the way. I am lucky to have a therapist who is very understanding, patient and empathetic and I have learned so much since then. Together with my therapist I learned to be more patient with myself, to accept myself the way I am and to become more resilient.
I discovered resources, that help me in moments of distress or when I’m feeling overwhelmed, and I learned that it is ok to ask for help.
My therapist knows about my chronic illness and is educated about ableism and other forms of discrimination and can guide me through it. But I know, that many people with chronic illnesses, especially those who have experienced medical gaslighting within the psychiatric field, struggle to find someone, who they can trust.
I understand that it can be hard to trust psychiatrists or psychotherapists again, and that is ok too. Therapy is something that can only work if you are ready.
If you are interested in therapy and are trying to find someone, I would take time to find the right person. Not every therapist can work well with any client- the relationship must be based on trust in order for the process to be successful! If you can, then talk to a few therapists before deciding to which one you want to go, and then decide based on your gut-feeling. At least, that's what I did and to me it was a very helpful approach.
Self- love is not steady; it is a process. But it is a very meaningful one.
Have you ever dealt with internalized ableism? What helped you the most?
Please feel free to let me know!
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With love, Rea