Leave the “dis” in my disability

Something that frustrates me is that many people want to change the word disability or try to call it something else. I have not always had this opinion, but I do now and I would like to explain where I am coming from.

Often people have the best of intentions when they produce “softer” names to replace the word disability. I apologize if that offends anyone, and I am not claiming to speak on behalf of all disabled people. I do know from experience and relationships with disabled people that I speak for many when I say that.

It bothers me a lot. Here is why.

When people see disability as a “bad word” that can feel like they are denying my reality or trying to dismiss something that is very central to my being. I cannot dodge the fact that it defines me in many ways. It just does.

I get that often people are trying to say that people with disabilities are capable and can do many things. Of course we can!

We can get that truth across without changing any names. And we should.

Much of the work I do revolves around trying to change the narrative surrounding the word disability. We do not have to deny people’s reality, but we do need to work to change the narrative that surrounds the word disabled.

Growing up, that word felt like something that was not okay for me to say or admit about myself. I convinced myself that I needed to try and hide the biggest part of me to have any sort of chance at self-worth. Yet, I knew that there were many things I could not do because of my disability. Disability has always been a part of my identity.

I prefer the word disabled because other words make me uncomfortable and feel condescending to me. The word disability feels fitting for my experience as someone who has lived an entire lifetime with a physical disability.

It is what it is, so why not just say it like it is?

I feel respected and seen when others around me acknowledge my disability. It does not mean that must be the main topic of conversation. It means that because of my disability things may have to happen a little differently, or I may need accommodations to get to the same end goal. It creates an awareness that is necessary to my wellbeing.

I want to live in a world where I can say that I am disabled and that not be an automatic negative mark on my character. Or where I am seen as lesser-than. Too often, I have been negatively categorized before I even speak.

Avoiding the word disabled only sets us back further. Something often seen as helpful is erasing disabled people from the conversation. It leaves me feeling as if I have failed and cannot be honest about how my disability affects what I am able to, physically speaking.

It only changes the surface and makes things look shinier outside but does not change the underlying attitude or negativity. At the end of the day, disabled people are still living with their disability. Renaming it does not change that.

We are all “differently abled,” but we are not all disabled.

Just because I cannot do some things, does not mean I cannot do anything.

Imagine if you went to the doctor and you had a certain condition, but everyone around you said, “We need to change the name of that” when you shared it with them. It sounds ridiculous.

That is my two cents on the topic. It is something that I am deeply passionate about and have a lot to say, sometimes so much so that I have a tough time putting it into words.

I appreciate the opportunity to be able to share my perspective. I hope that you can respect my opinion. If you disagree with me, I respect your opinion, too. I would encourage you to include disabled people in the conversation when making decisions about what to call disabled people.

I spent most of my life trying to escape my identity. I no longer want to run or hide from what I have always been: disabled.

I will spend the rest of my life working to change the harmful misconceptions that surround disability.

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, freelance writer, wife, and mom of two boys. She is the recipient of the Reporter’s Winter 2025 Ink-Stained Wretch award. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.