People with disabilities are often marginalized by society – and there are a variety of reasons for it.
The social model of disability focuses on how instead of viewing our symptoms as failures on our part, it’s time to start looking at what assumptions society has made that make participating in the greater community more challenging.
Too much of the world is designed in a way that is inaccessible to too many people.
One of the major problems is that very often we, as disabled people, have bought into the ableist societal perspectives and so view ourselves as less worthy of support or inclusion due to our disabilities.
Internalized ableism occurs when a disabled person believes that they are less worthy due to their disability and act accordingly.
From disproportionate feelings of being a burden to self-hatred to assuming personal incompetence in areas of your life not associated with the limits of your condition, many people with disabilities suffer from internalized ableism.
I know it can be a struggle for me as well, and I sometimes fall prey to fears about my own life and choices.
I do my best to fight these instincts though – whether it’s to readjust my expectations for myself as needed, to reexamine why I have taken the actions I have, or whether it’s to take some time to give myself grace about an incomplete project or a missed deadline.
When my symptoms started(and I think this is very common among people with disabilities), I was often extremely embarrassed by my symptoms.
I remember being afraid to go out because I might start shaking or limping or whatever.
I remember being so worried about wetting my pants that I didn’t feel comfortable leaving the house.
I know it’s frustratingly common to feel like all avenues are closed because of a disability – it took me a long time to rethink how I could manage my life with my FND symptoms– and my understanding is that this is a very common challenge.
Defining our limits
Are there limits? Of course. But the limits are based on the practical limits caused by our conditions, not the label of disability.
For example, knowing how my movement symptoms work, I sometimes elect to stay home instead of going to the city for an event because the cost of going would be too high(risk of injury or just too fatiguing), but that doesn’t mean that I can never go, just that I need to evaluate my limits each time I go up.
For a person who needs a motorized wheelchair, their limits include needing ramps or elevators that can carry that weight. But it doesn’t define their intellectual limits or hand-eye coordination.
Visible conditions can give some clue about the impairments a person has, but there’s also a huge(and growing)population with recognized invisible impairments, which need to be recognized and respected as well.
When dealing with anxiety issues, I do my best to recognize when I’m at a high anxiety level and manage it, as well as being extra aware of potential triggers – either avoiding them or minimizing how strongly I respond to them – giving myself some extra processing time.
For many neurodiverse people, that acceptance and understanding can be especially important.
The better you can define and recognize your own limitations, the easier it is to ask for the support that you actually need, instead of having to struggle to make your needs understood.
Also, defining those needs well lets you better recognize when those needs aren’t being met so that you can take steps to correct the problem.
To me claims such as “my disability made me do it” reeks of internalized ableism.
Yes, our conditions give us limits, but part of our jobs is to understand our conditions to the best of our ability and grow as human beings within the boundaries our conditions set.
Using our own symptoms as an excuse, rather than an explanation, keeps us from growing as human beings and shrinks our world.
Managing my internalized ablism
There are things that I strongly believe as part of this fight against internalized ablism
- I am a person who happens to have FND(Functional Neurological Disorder) – I do not let my diagnosis define my identity or actions. I also happen to have a history of depression and anxiety, as well as migraines.
- I do have physical, mental, and emotional limitations with these conditions, and I value defining what those boundaries are(and are not) and how permanent(or impermanent) they are
- My actions are mine and I need to take full responsibility for how they affect others
- Empathy and compassion are important skills to nourish, and every interaction with others is an opportunity to nurture these skills
- I deserve respect and would not intentionally disrespect others
- My symptoms are outside of my control, so I need to plan for them, and where appropriate take responsibility for their potential effects.
I know that I have had points where I defined my own progress in terms of “overcoming” my FND, or “defeating it”.
That’s also internalized ableism.
My FND is part of who I am, part of my identity.
It isn’t an enemy outside of me at all – it’s a part of who I am.
A part of me that I need to make peace with, a part to befriend and manage, rather than a foreign body that is trying to force me to fail.
Ableism is both insidious and extremely common
I don’t want people to fall victim to ableism and it, in all honesty, is an unfortunate practice common to both abled and disabled people.
Why is this the case? Well, because it’s a deeply accepted part of how our society works and because it’s a very normalized part of how our society works.
If a person hasn’t thought deeply about ableism, they likely participate in it.
All too often, even today, making things accessible isn’t a priority, and the definition of accessibility is still often limited to just physically obvious conditions.
While people have picked up that certain terminology is now frowned on, too often there isn’t as much recognition of what it actually means to be respectful of other people’s disabilities, or of what ableism truly is.
Disabled people are the largest minority, but we generally are defined in a medicalized way.
By this, I mean that not only are we defined by our diagnoses(often, people talk about “blind people” or “Little People”(if they know not to refer to them as dwarves) or “Autistic people”), but we are viewed as outliers and failures within society.
There is still talk of “curing” autism, people with disabilities have an unacceptably high unemployment rate, and we are rarely seen on television or in movies, and even more rarely presented as unique individuals.
While accommodation needs vary by condition, dividing us by diagnosis also limits our potential and power as a community.
All too often, the focus of research and news is how the doctors have defined our condition(s) rather than how these symptoms impact our day-to-day lives.
By the same token, all too often, the focus and emphasis of abled people is on curing the disease, rather than understanding the condition.
I remember early on in my own process, having people express disbelief that there was no pill that would cure my FND.
Those same people often then lost interest in hearing about what I can do to manage it, or how the condition worked.
There seems to be a desire for disabled people to just get better and be normal again, when that simply isn’t how it works in most cases.
From ableist descriptions(the weather’s been crazy lately) to ableist sayings(it’s the blind leading the blind), ableism has been and remains in the center of much of our society and a socially acceptable form of expression.
Recognizing and manageng ableism is in its early stages here, and so it’s deeply embeded in our culture.
Recognizing our own ableism
Disabled people frequently make ableist statements and ableist assumptions. Sometimes this is directed outward to other disabled people, and other times, it’s directed inward towards ourselves.
We often are made to feel like a burden, especially for folks who become disabled later in life.
While grieving the lost identity is healthy, there’s always got to be a point when you accept who you are and decide to move forward.
Ableism makes that acceptance and recovery process much more difficult, because it’s so easy to carry on with the ableist images we’ve already recognized and go “since I can’t do X, I can’t do y either” even when it isn’t true.
For example, Deaf people can still enjoy music, Blind people can still paint, paraplegics can still dance, and people with pretty much any disability can still find ways to live a joyful and meaningful life.
However, being disabled does make most everything harder – physically, mentally, and emotionally. There is a grieving process, and the loss is real.
For too many of us with disabilities though, it’s a little too easy to slip from that grief and sense of loss into a state of internalized ableism that leads to (sometimes severe) self-limitation.
While I doubt anybody is completely immune to this, each person has their own point where the risk of this is the greatest, or their own specific form of internalized ableism, based on the combination of the condition(s) they have and their own life experience.
We all deserve to be happy with ourselves, but internalized ableism can, too often, stand in our way.
The mental and emotional transition isn’t easy, and it’s something that most people haven’t completely achieved. It’s a goal to aim for, work to progress on, and an ideal life situation.
We can recognize and stop our own internalized ableism
We can recognize that we are all likely guilty of ableism to some degree, and that it is something that we can work on managing. How can you(as an individual) do that?
- By accepting that your condition(s) create(s) real limitations
- By recognizing that you still can do many things despite those limitations
- By allowing yourself healing time – to recognize and grieve the losses your condition is associated with
- By choosing to find the positives in your life and focusing on what you can do, rather than what you can’t
- By actively choosing to befriend your own condition and to evaluate your own capabilities, rather than let society tell you what you can and cannot do.
- By recognizing that your relationships will be impacted by your condition(s), but that does not mean that negative results are your fault.
As disabled people, we deserve respect and a better quality of life. One piece of that puzzle is, very simply, to respect ourselves and make peace with our own disabling conditions.
This is such a great post. The world is not made for us. It’s a vicious cycle stepping or wheeling out the front door and knowing that every single thing you encounter outside your front door is not meant for you. Like you, I am often afraid to leave my house now. I’ve been harassed and abused after asking for disability services or a proper seat to sit in at a restaurant, and then you feel so awful about asking for something that no one else needs. It’s such a hard thing to cope with and explain.
This part is brilliant:
“Disabled people frequently make ableist statements and ableist assumptions. Sometimes this is directed outward to other disabled people, and other times, it’s directed inward towards ourselves.
We often are made to feel like a burden, especially for folks who become disabled later in life. While grieving the lost identity is healthy, there’s always got to be a point when you accept who you are and decide to move forwards.”
Thanks so much for the tips at the end of your post! xo
Thank you so much for your kind words!
Pre-Covid, I wasn’t so worried about going out, but on top of the risks from the disease itself, I have seen and heard a lot of ableism expressed around that topic.
It can be so hard because as you said, everything we ask for is generally viewed as ‘extra’, demanding, or above and beyond, when we are really just trying to participate like everyone else.
I did my best with the tips, we all come at this from slightly different angles and experiences, but I always feel that self-knowledge and self-acceptance is one of those consistent keys to progress- the better we understand who we are and what we need, the more clearly we can ask for it, and the more likely it is that others can understand and meet that need.
We deserve dignity and happiness. Knowing that is the case is an essential step towards getting it!
We have this mindset ingrained in us. It’s hard to stop the negative self-talk. Last night, I listened to a guided meditation on Calm about gratitude and how that can help create self-love. Give gratitude for what I can do, what I’ve learned from this experience with chronic illness, gratitude for who I am…”By choosing to find the positives in your life and focusing on what you can do, rather than what you can’t”
Katie – exactly! It isn’t easy for many folks, but that makes it all the more important. We deserve to feel good about ourselves just the way we are!
I feel I have so much to learn about this. I became visibly disabled five years ago. When my disability was invisible I never thought about any of this because no one would see an invisible disability as a disability so it became tough for me to belong in a category and yes I wanted a category because mentally it’ll settle how random it all felt mentally.
So yes, I really have a lot to learn about internalised ableism. Thank you for this post – it helps me to understand things better.
So glad you find it helpful! My FND symptoms aren’t consistently visible, but when they become obvious, I really get this sudden look into what many folks with obvious disabilities go through, and it isn’t pretty.
What a great post as always Alison – I can literally feel the passion and fire in your voice as you advocate for such issues. Internalised ableism is insidious as you say. Too often we don’t even realise we’re doing it, and sometimes we even think it’s a self-sacrificial sort of thought when it serves no good purpose. Thanks for writing this important piece. Gonna reshare and reshare plenty times!
Thanks Sheryl! I’m honored!
I didn’t realize how abelist our society is until I got a chronic illness. Internalized abelism is a hard thing to shake, but I love the ideas you’ve shared.
Thanks so much! It really is tough to be truly free of ableism, so we just need to do our best!
Thank you for sharing your thoughts about freeing ourselves from ableism. My illness is an invisible illness. I’ve spent time grieving the person I was and I’m working on acceptance of who I am now. Trying to understand and learn my triggers and limitations, while celebrating the things I can,alter to fit my new lifestyle.
Self care and listening to my body, while challenging myself to learn different ways to do things that I took for granted that I could do. I’ve hit walls, I’ve struggled, but I’m proud of what I have been able to accomplish.
Sometimes I know my actions will cause a flare up and sometimes it’s totally worth it ( like having grandkids over to spend the night). I know I will have to rest, will experience more pain for a day or a few days, but to make those memories with my grandkids are worth it! Accepting that I will or might be down with a flare is part of that acceptance for me.. Also it’s becoming easier to explain to my grandkids as they have gotten older that sometimes grandma has to lay down to rest before we make cookies 😘.
The most difficult thing for me is letting others down because I’m unable to make it to an event (such as a grandchild’s birthday) because I didn’t pace and rest like I needed to Prior to the event.
I’ve learned that I may miss out on lunch plans with friends. I have learned to tell them that may be a possibility but I will try and do my best to make it. Then being able to be excited iwhen I can and not self loathe if I can’t.
My family & friends are getting better at accepting my limitations, but I know I sometimes hurt them because i I’m unable to attend.
I cry, beat myself up, and allow ableism to seep deep into my heart and my mind.
It is getting easier to cope with that part of acceptance and to not let ableism rule my thoughts. It is a work in progress but I’m working on it. To not let all those thoughts seep into my being. It doesn’t do anything but make me feel worse.
Being able to accept I will sometimes have to miss important events and that doesn’t make me a unable to never participate, because I may be able to participate the next time.
Educating and talking to family & friends about accepting my limitations and embracing my accomplishments is something I am now able to face and I’m working on that. The more I accept this, the easier it becomes for me to cope with the upsets.
If I understand ableism correctly, then for me acceptance is part of my journey. To accept and adjust areas in my life , and understanding that others may or may not understand. The more I practice turning negatives into positives, means I am going to be ok! Even when things are really tough.
Am I on the path to understanding ableism or do I need to read your article again 🙃?
Absolutely sounds like you are on the right path! I’m glad your family and friends have become more accepting, and I hope you can learn to give yourself more grace when it comes to missing important events! You deserve to be happy with yourself.
You bring up so many great points about how we think about disability and illness. I especially appreciate what you wrote about letting go of “defeating” your illness, instead recognizing its part of you and your identity. I love the idea of befriending your condition instead of engaging in ableist, negative self-talk.
Thank you so much Cassie! I’m all about being positive whenever it’s a healthy option. Making peace with ourselves can really help our healing journey
“Positive whenever it’s a healthy option”—I like that!
Absolutely! All of our emotions can be useful and are part of our experience. Our brains skew towards the risks and dangers because those are what could kill us. Guiding ourselves towards noticing the positives is healthy…forcing ourselves to pretend all is well when it isn’t. ..well that’s not going to lead us in a healthy direction either!
Thank you so much! I was diagnosed with MS when I was 20 and I stopped working then. I felt afraid to drive to due to numbness and half-blindness cause by MS. I had so many messages of ‘I can’t’/’you can’t’ from within and outside of me. I am beginning to truly see those parts of me and the world. I started working 2 years ago, I’m now 38. there are many invisible challenges for me at the workplace, for example, I can’t stand for a long time as my coworkers do, I’ve often felt guilty about this=internalized ablesim . When I was hired one of my bosses actually asked me if i had ‘cured’ the MS as if that was a measure of whether I would be a good naturopath=ableism. I’m seeing all this now and beginning to empower myself from the inside out, while acknowledging my limitations. And that those limitations don’t make me a weaker person, they can make me stronger! Thank you!
Renee, thank you for your kind words! I’m glad that you found this post so helpful – internalized ableism is so prevalent and challenging to break through!
Congratulations on finding a job and returning to the work force – and on recognizing your ableism experiences!
The first step to solving any problem is recognizing that there is one! You have taken some great steps and I hope you can continue to heal!