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Thoughts From Reading Demystifying Disability by Emily Ladau

I finished reading Demystifying Disability by Emily Ladau last week. It's a fantastic book discussing disability, ableism, accessibility, disability etiquette, and many more things. I highly recommend buying and reading or listening to it!

I have so many thoughts from reading the book, and I want to share some of them with you. And I know many more will come, as I often process new things over the course of a longer time.

Person-First Language vs. Identity-First Language

So, for those unfamiliar with the terms, person-first language (PFL) means using phrases where the person comes first. So, for example, people with disabilities. On the other hand, identity-first language (IFL) recognizes that disability is part of the person's identity, such as Autistic people.

Emily Ladau writes about her experiences with these approaches:

Truth to be told, I went kind of overboard with my IFL evangelism at first. I could not understand why anyone would prefer PFL and pushed against it whenever I had the chance.

I could say I was the opposite. At some point, it was difficult for me to understand why someone would like to go with the identity-first approach. Okay, I knew the reasons, but I could say I did not truly understand it. But now I do, and even better because of reading Demystifying Disability.

The book also got me thinking about why I've been feeling this way. For those of you who don't know, I had a concussion a few years back. I'm still recovering from it, and I know that things won't go back to what they were before that hit.

I was 26 when that happened, so I had a pretty strong sense of who I was before that. One thing was that I had an extraordinary memory. I could recall details so well that people around me found it strange sometimes.

And that was a big part of my identity. After the concussion, I realized I have problems with my memory, and I've had to come a long way to actually accept that this is my life now and I'm not the same person as I used to be back then.

But I'm guessing that this is one of the reasons I prefer to refer myself with the person-first language. I am still working with my identity because of the significant changes (memory is not the only one), and I assume I still will be for a long time. And that is okay.

As a final thought to this part, I want to remind you that it's a personal choice, and if someone prefers either one of these approaches, please do respect that.


Okay, let's start again with some definitions. How Emily Ladau defines ableism:

Ableism is attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.

Ableism is well-woven into our society, and we all echo these ableist biases and beliefs. And as with any type of systemic discrimination, it's hard to see if you're not part of the group that society discriminates.

I want to discuss two things related to ableism; systemic ableism and that people with disabilities can be ableist as well.

Systemic Ableism

Emily Ladau brings up the fact that ableism is a self-perpetuating cycle. I can fully agree with this and give an example from conversations I've had with people.

I often hear that the reason for not having accessible offices or using accessible apps and services in work environments is that "we don't have any people with disabilities working in our company." First, you wouldn't know, as people don't always want to disclose their disability statuses.

And then there's this: If your workplace is not accessible, how can a disabled person even come to an interview? If the applications or interviewing techniques you use for interviewing aren't accessible, how do you think you will be even able to hire someone who has barriers already before starting?

Again, Emily Ladau writes it well, saying that ableist assumptions lead to systemic ableism, which in turn leads to discrimination, despite being unintentional.

People with Disabilities Can Be Ableist Too

I love how Emily Ladau points out that there is "no magical force field preventing disabled people being ableist." That is so true. Being a person with a disability doesn't mean I couldn't be ableist as well.

Even though I'm an accessibility specialist and disabled person myself, I still catch myself having these ableist thoughts. And I've definitely done some ableist things. But the thing is, we all do. From now on, we need to recognize these thoughts and actions. We need to try to be better and apologize if it's possible in that situation.

Inspiration Porn

Emily Ladau defines inspiration porn with the following words:

[Inspiration porn] is an accurate way to describe the concept of how disabled people and their stories are objectified by the media to make observers feel warm and fuzzy or better about themselves.

Late Stella Young popularized this term, and below, you can find her TEDx talk "I'm not your inspiration, thank you very much." Here's also a link to the transcript of the talk.

I think that talk is so on the point of the problems of inspiration porn. Why are disabled people seen as inspirational just because they get up in the morning and get on with their days? Would you say someone without a disability is inspirational because of that?

I often pass as a nondisabled person because my disability is invisible. And truth to be told, one reason for hiding it's that I'm a bit afraid that I would be seen as inspirational for doing something that anyone else would do despite having a disability.

In her axe-con-talk, Haben Girma speaks about using the word "inspired" in the sense that what you are inspired to do when someone is inspiring. That's totally something I can get on board with.

So, when we feel like someone is inspiring us, let's think about why that is. Is it because seeing someone with a disability makes us feel better about ourselves, in a way that we believe that we are better than them? Or does it make us work towards an accessible world for all?

Wrapping Up

I love Demystifying Disability and highly recommend it to everyone. It's an excellent overview of disability, ableism, accessibility, and many other themes.

In this blog post, I touched on only a couple of different themes in the book. As mentioned in the beginning, it gave me a lot to think about, and I believe there will be new realizations as I keep thinking about these themes.


Top comments (1)

jodoesgit profile image

Hey Eevis, late tot he party here but this was a good read. I can actively say the hardest thing for me to accept was my life pre/post diagnoses. On account of always being such a ball-of-energy. It seemed like no matter where I lived or who I was talking to, I was generally liked and spun up conversations with the masses. The spirit is still strong, but the body can differ hour-to-hour and that's a difficult thing to cope with.

When I accepted that time can only move forward, and that looking back was for fools, it seemed like I finally got to get out of the mourning process. And when you're there, you really can't grow. If you know what I mean? I will say that I am about 20% more bitter than I was before, but I don't really care anymore. That bitterness is more like apathy post-acceptance. So I guess I'll just say - I'm more apathetic than I ever was. But also I'm older. I swear it creeps up on you, no matter what.

There's some things I absolutely DO NOT ascribe to that I think are rife in the corporate/tech world. Toxic positivity can suck a butt. Grind can as well. I'm not sure where I fit in, as I am still honing my skills. But I am confident that there is a space out there for me. Will I ever make as much as my peers? Probably not. But hopefully I can make enough to survive, regardless of what the future holds. And to me that's worth mil.

So yeah, that's how I feel. Also inspiration porn is pandering in some senses but I am also very happy for those who feel good building themselves up that way. The bootstrap narrative of just trying a little harder and never giving up is a falsehood. And people truly are snowflakes (regardless of what anyone wants to tell you). We've all got our own specific wants, needs, and backgrounds. So it's insane to create a uniformal "action plan" for all living, breathing humans. But that's just a little of my apathy and dislike of toxic positivity going to play there =P!

I hope you have some rewarding work you're performing in a safe-space. And that your basic-needs and then some are met. Looks like you're in a good location to do so, and I am glad you are. Keep on, keeping on!