Internalized Ableism and Limb Loss: Our Own Worst Enemies

Do you fall prey to internalized ableism? If so, you’re not just hurting yourself. You’re depriving society of your gifts.

By Angelina Martinson

I was 24 when internalized ableism hit me like a ton of bricks. I did not know the term yet, but it had been a part of my life the whole time. It just took me 24 years to figure out what lens I had been looking through. 

It happened at the dreaded DMV. I had just moved across the country and was waiting in line to sign a few forms and switch my state ID from Illinois to Washington. When I got to the counter, the clerk paused and told me I was handicapped—like he was informing me of some terrible news that I had no idea about. I responded, “No, I’m not.” This led to a few moments of very uncomfortable silence. 

Technically, I was disabled—I am missing my right leg below my knee. But I had been driving with a prosthetic leg for years and never had to disclose a disability on my license. Above all, I did not consider myself handicapped. I took a lot of pride in not using the handicapped stall in the restroom, not getting handicapped parking placards, and, well, not addressing my handicap. I felt these accessible things were made for people who were “more” handicapped than I was. I was (and still am) very active, and I was rated as a K4 ambulator, the highest level of mobility. Therefore, in my mind, I shouldn’t be using these things intended for people who really need them.

I had gone to great lengths to prove how capable I was. So when a complete stranger saw right through that, I was floored. This feeling of pride is hard to explain sometimes, but the honest truth is that I didn’t want to identify as disabled because that felt weak. Yes, I am an amputee, but I’m perfectly capable, and I didn’t need a mark on my license to make anyone think otherwise.

From a young age, we’re taught that our worth and value are tied to our achievements and capabilities, and this can make the journey to self-acceptance very difficult for individuals with disabilities. When we don’t meet society’s standards, it’s not society that adapts. Rather, we must mold ourselves to fit the nondisabled world’s very narrow definition of ability. 

That’s internalized ableism in a nutshell: the deeply ingrained belief that our value as human beings is somehow diminished by our differences in physical or cognitive ability, and the compulsion to conceal our disability—to deny part of our identity. This subtle yet insidious form of ableism can permeate every aspect of our lives. As a lifelong amputee, I succumbed to it without even knowing what it was. But I had a shocking revelation when I became familiar with the term and read a list of internalized ableism’s “symptoms”:

  • You feel like you don’t belong—You submit to other people’s notions of where you do or don’t fit, instead of recognizing that a truly just society would accommodate your needs and differences. For example, you think you don’t belong in a restaurant because there are no ramps, instead of believing the restaurant should accommodate people in wheelchairs.
  • You always blame yourself—You blame yourself for being different when you encounter obstacles. You also blame yourself when people are unkind to you, instead of reprimanding them for their lack of empathy or understanding. 
  • You’re constantly trying to prove something—You go out of your way to prove that you’re as capable as everybody else.
  • You don’t like who you are (specifically relating to your disability)—You buy into the perception that your amputation is something to be hidden or ashamed of. You may even go to great lengths to hide your prosthesis.
  • You never ask for accommodations—You feel you should be able to do everything independently, without support or assistance. It’s not that you don’t want accommodations; you feel like you don’t deserve them. 
  • You’re pessimistic about your future—You’ve bought into the idea that being an amputee means you can’t achieve your goals, so you lower your sights. Or, even worse, you don’t set ambitious goals for yourself.
  • You insist on doing everything able-bodied people do—If someone else can do something, you stubbornly insist that you should be able to do it, too. Even if something drains you and frustrates you—and you get no practical benefit from it—you try to do it anyway. 
  • You don’t know any other amputees—Your impressions of people with limb loss are shaped by popular media, which portray amputees as either tragic or heroic. You may even purposefully avoid affiliating yourself with other disabled people because you think it will draw unwanted attention.

After I read those eight symptoms, I realized I would have to check “yes” next to every box. Not just a few of them. Every. Single. One. I was 100 percent internalizing ableism and didn’t even know I was doing it.

The costs of internalized ableism are manifold. It robs people with disabilities of our dignity, our autonomy, and our sense of self-worth. It perpetuates a cycle of shame and self-doubt that can be incredibly difficult to break. And, perhaps most tragically, it deprives society of the unique perspectives and contributions that we have to offer.

FROM A YOUNG AGE, it was instilled in me that my disability was not going to limit me. I internalized this principle while growing up in a world where I only saw people with disabilities at the hospital. In that setting, I felt like my disability wasn’t as bad as some of the other disabilities that people experienced. And when I was outside the hospital, I wasn’t ever around any other disabled kids. At school, on the soccer field, and everywhere else I went, I was the only amputee. But no matter where I was, I stuck out at an age where all you want to do is blend in. At the hospital I felt “too able,” and outside of those walls I felt compelled to pass as “able enough.” So I forced myself to do what all the other kids did, and I did a pretty good job at it.

As an adult in professional settings, my internalized ableism manifested itself as a reluctance to request accommodations for fear of being perceived as a burden or less capable than my  peers. I remember one time when I was talking to the CEO of my company as we walked to a meeting, and he decided to take the stairs—so I just followed suit. I was trying hard to walk “normally” up those stairs and keep pace, even though I have a heart condition (which is common for people born with clubfoot) that makes talking and going up stairs at a brisk pace really awkward for everyone involved. But I was afraid he was going to notice I was disabled and look at me differently because of it.

That’s what internalized ableism does to us. We push ourselves to the brink, sacrificing our well-being for the sake of appearing “normal” in the eyes of others. And even when accommodations are provided, there’s often a lingering sense of guilt, as if we’re somehow cheating the system or taking advantage of preferential treatment. 

Currently, amputees and other people with disabilities are underrepresented in fast-growing industries. Yet at the same time, disability is increasingly visible in all media. Seeing advertisements that depict the disability community, but not having those portrayals replicated in real life, creates cognitive dissonance and reinforces internalized ableism. 

In personal relationships, internalized ableism can lead to feelings of inadequacy or unworthiness. We accept (often unconsciously) society’s messages that our bodies are flawed, that we are less desirable than nondisabled people, or even that we are not worthy of love. We may settle for less than we deserve, tolerating mistreatment or neglect because we believe it’s the best we can hope for. 

It takes effort to resist these thoughts because they’re regularly reinforced—sometimes in the bluntest of terms. Lots of strangers have told me how lucky I am that my perfectly able-bodied husband chooses to be with “someone like me.” Or, if they haven’t seen/met him, they will immediately ask what limb he’s missing. These are strange encounters that nondisabled people rarely experience. Nobody assumes you must be with another person who wears glasses just because you yourself are wearing a pair.

I remember when my first boyfriend broke up with me. I was devastated—what teenage girl isn’t? I cried to my mom that night that I probably wouldn’t find anyone else, because nobody looked at me that way. I was always friend-zoned because of my leg. She told me that was a terrible mindset. She said I was worthy of love, and that anyone who was worthy enough of my love would see that. I think this aspect of internalized ableism was the hardest for me to overcome.

Even when interacting with healthcare providers, internalized ableism can have devastating consequences. We may downplay our symptoms or avoid seeking treatment altogether out of fear of being dismissed or belittled by medical professionals. And when we do receive care, it’s often through a lens of pity or paternalism, rather than genuine respect for our autonomy. When I was in high school, a clinic offered to put me in a hydraulic ankle. They also switched me from pin and lock suspension to vacuum suspension. The clinic told me this would be a huge step up for my mobility; my previous leg was very simple, and an advanced prosthesis was more appropriate for me because of my high K level.

But the change was very detrimental to my residual limb. My leg became significantly heavier overnight, and the added weight started causing me extreme knee pain. I didn’t speak up, though. I thought I should be grateful to have this amazing new leg, appreciate its advantages, and learn to cope with the pain. I wore an uncomfortable leg because I didn’t want to cause a scene. I wanted to get my device and get out. I was unable to achieve my best quality of life because I wasn’t demanding it. 

However, when they started making comments about revision surgery, I decided to put my foot down. I asked—still very meekly—if I could go back to my old leg. I had never had issues with it. I didn’t care for the fancy new ankle and felt like it was actually holding me back. The vacuum was also unnecessary, in my opinion. I liked the simplicity of the pin and lock. I am rough on my legs and like that I can be. I had to be cautious with the higher-tech model and plan ahead to charge it and worry about being around water.

I have been an amputee for nearly 30 years, but I have only been an advocate for myself for the past ten. Once I decided that the only person who could speak for me was me, it made a huge difference in so many aspects of my life. I had bought into the attitude that my disability was something to be ashamed of or apologized for. I was going to great lengths to hide my disability. Once I changed my attitude, my world completely changed. I shed my cosmetic cover. I got a higher activity level foot/ankle (that was not hydraulic) and became way more active in things I loved. I also started dating! It wasn’t my limb difference that had been inhibiting my dating life, it was my own attitude toward it. I had this new sense of confidence. Confidence is sexy!

WHERE DOES INTERNALIZED ABLEISM come from? It’s a complex interplay of societal norms, cultural attitudes, and personal experiences. We’re bombarded with messages from media, advertising, and even well-meaning friends and family members, all reinforcing the idea that disability is something to be pitied or overcome rather than accepted and embraced.

I now realize I am worthy of love, I am allowed to ask for help, and I am disabled. And I have been trying to address my internalized ableism anytime I feel it popping up. Instead of refusing assistance, I use the resources available to make my life a little bit easier. Back to the DMV for a second: I now have handicapped parking placards. I don’t use them all the time, but I have used them on days when I am struggling and need help. At the airport, I get on the plane during the early-boarding period for people with disabilities. This takes a lot of pressure off me when traveling. I am not as fast as other passengers, and I take a bit more time to get situated in my seat. I also got an America the Beautiful Pass. This is a lifetime entry pass to all US national parks; it’s completely free for people who have a permanent disability, and it covers you and whoever else is in your car. I am very passionate about our national parks. I love being outdoors and hiking. The fact that I am encouraged to do so by this free pass is so exciting to me.

Here’s another habit of internalized ableism that I recently shed: I took my bicycle to a mechanic and asked for a few special adjustments to make it easier for me to ride. I have stopped trying to conform to every off-the-shelf product designed for nondisabled consumers. I figure out what can make my life a little bit easier, and I use it. I don’t know why I spent so many years fighting this. Now I can pedal alongside my able-bodied friends and enjoy the experience as much as they do, instead of suffering through the ride just to prove I can keep up.

In my lifetime, I have seen a major shift in society’s view of people with disabilities. But, most important, I have seen a shift in my own view. I believe the way I perceived myself was rooted in how others treated me. I internalized their perceptions, developed a negative self-image, and tried to hide behind a facade of normalcy. Now that I understand disability is normal, I am much more confident, carefree, and true to myself. That shapes the way people see me: I receive a lot more positive comments.

By challenging internalized ableism, we take so much pressure off ourselves. It starts with recognizing that disability is not a personal failing, but rather a natural variation of the human experience. It means accepting accommodations that make for a more accessible environment. It empowers us to demand equal access and opportunity for all, regardless of ability. And it requires us to confront our own biases and assumptions and strive for a world where difference is celebrated rather than stigmatized.

True inclusion requires more than just ramps and zipper-free clothing. It requires a shift in mindset, a willingness to confront our own internalized ableism, and a commitment to building a more inclusive world.

Angelina Martinson is a biomedical engineer specializing in medical devices and prosthetic technology. Follow her on Instagram at @adaptiveamputees.

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