Unpacking Internalized Ableism

When I began my chronic illness journey, I hadn’t heard about internalized ableism, but I wish I had. I might have avoided the many times I pushed my body and mind past their limits. Or, I might have stood up for myself and asked for accommodations more often.

Internalized ableism is when we believe we are less worthy because of our chronic illness or disability. People who act on this false belief will avoid getting mobility aids, eschew treatments, force their bodies to perform in ways it cannot, and often harm themselves because they think that receiving help, care, or accommodations makes them inferior.

Ignoring my own needs to make others comfortable

Being queer and trans, I was well-versed in spotting internalized homophobia and transphobia but not internalized ableism. It’s insidious and sometimes hard to spot.

But, noticing internalized ableism is a skill you can learn over time, and one way is to recognize when you’re holding yourself to unrealistic standards and to give yourself grace.

Here are some examples of ways I’ve ignored my own needs because of internalized ableism:

When walking with a friend, I often try to match their pace rather than asking them to slow down for me. I will try to slow our pace through body language, like slowing my own pace slightly rather than explicitly saying I need to slow down because I’m afraid of seeming inferior to them or being a burden.

Even though I have a grabber tool in the house, I still bend down to get things, which causes me pain a lot of the time.

When doing physical therapy or movement exercises alone, I push myself as if I’m trying to impress my coach. This always leads to injuries and setbacks, and the irony is that my current coach would tell me to go as slowly and gently as possible, not to push myself.

Internalized ableism: how it affects our thoughts, emotions, and relationships

Internalized ableism not only manifests around mobility and movement; it also with our emotions, thoughts, and mental processes.

For instance, I am known for staying awake in the evening to get one more thing done, read one more chapter, watch one more show, even though I’ve been yawning and nodding off for an hour. I don’t have the same amount of energy as non-disabled people or even the energy I had 20 years ago. Though I love being a night owl, the reality is that my body wishes I’d go to bed closer to 10:30 pm than at 12:30 am.

I’ve also struggled lately with telling myself I’ll never find another partner because I’m disabled and chronically ill. Ouch. My health has nothing to do with my worth as a human, and I’m working hard to reframe this and tell myself that I deserve and can find someone who will love me for all of me.

An especially vulnerable and delicate area where internalized ableism manifests for folks with endometriosis is around sexual intimacy. There is often so much pressure for us to perform in certain ways during sex, and that pressure can come from a partner, but it can also come from ourselves.

I’ve done a lot of therapy and inner work on this, and I know two things about myself: penetration is too painful, and I am no longer interested in it. I do much better when lying down during sex because it helps me maintain stamina.

Although clear about these things, I still feel shame and inadequacy (hello, ableism!). But the right partner will help me practice asking for what I need and noticing when to shift positions or activities.

Especially when disabled folks interact with non-disabled folks, it can be challenging to convey our access needs, and a disconnect can also occur between disabled folks who have varying experience with unpacking their internalized ableism. The best thing we can do is continue to work on ourselves, get clearer about our needs, and speak up for them often.

It is easier said than done, and the support of a therapist with experience working with the disabled and chronically ill community is an invaluable asset. Support groups, online communities, Discord servers, and reading books by disabled and chronically ill authors are other excellent ways to do the work.

Ask for help, buy the mobility aid, take the medication, post your questions on forums like ours, and fiercely believe in your inherent worth. Give a giant middle finger to ableism and watch yourself become more empowered and solid in yourself.