I was recently diagnosed with Asperger’s Syndrome (a term many people have criticised) or Autism Spectrum Disorder. I believe that many Indians will see this diagnosis as a trend because it is relatively new to our society and our understanding of mental health. I know that many of these people will even think that these diagnoses are the “in” thing. But it is a lot more than that. Demystifying Disability by Emily Ladau clarifies that for us — that it is not cute for anybody to have a disability. Neither is it brave, nor something to pity. 

But even if we believe that the best way to behave with other people is with empathy and respect in all circumstances, society doesn’t come with signposts on what that respect looks like. It can be confusing to be an ally (as I’ve learnt in other contexts myself). Demystifying Disability breaks it down, bit by bit, to make it easier. 

My favourite thing about the book is that Ladau herself is a person with a disability. 

“We just have the audacity to believe that disabled lives are worth living,” she writes. 

Her book covers ways to define disability and how to understand it. She provides an overview of the history of disability, disability etiquette in the United States, media representations, and the roles allies play in the lives of disabled people. The way I have used this book to suit me best is by locating all these aspects in my own context in India, and how they present themselves here. Most of these experiences are universal, and so is allyship. 

This book has made it easier for me to understand disability better and to navigate through spaces better. It’s helped me start to understand how not to blame myself for being “inept” by the standards of the world, which is led by a neurotypical majority. It has also helped me understand other disabilities, not from a scientific perspective, but a lingual and social perspective. I’ll summarise some of what she says when she gets down to the details of grammar and language. In her first chapter, “So, What Is Disability, Anyway?” she explains how to think about and define disability, and how to use the language around disability correctly – to emphasise language that centres the person, rather than their identity when we talk to or about them. It brings home the point that disability is a part of what goes into the making of a person, and not the whole. (There’s a helpful table at the end of the book for people who need a ready reckoner.) 

One of my key takeaways was how Ladau differentiates between “high-functioning” and “low-functioning.” I previously used these terms to put my own case, telling others that even if I might have some shortcomings in the way I function, it didn’t make me incompetent – and so, I was “high functioning.” I now realise that I’d been doing that to protect my opportunities and my potential, both in my personal and professional contexts. But while it helped me in some ways, it did come in the way of me seeking support when needed. Ladau writes, “Placing this label on me isn’t a compliment. It wrongly pits me against people whose disabilities impact their writing and speaking abilities, holding me up as somehow superior to them.” 

Now that I see the problem with it, I wish I had never used it before. 

Ladau also decodes for us the types of disabilities and different models in her second chapter, “Understanding Disability as Part of a Whole Person.” From chronic illnesses and communication disorders to developmental disabilities and mental health disabilities, Ladau’s explanations are helpful for a holistic understanding of these distinctions, for those unfamiliar with these diagnoses and lived experiences. 

The third chapter is a summary of the American history of disability and how its laws and activism have evolved. “I’ll be limiting my overview to United States–based events that occurred from the early twentieth century onward and that I believe have directly impacted the rights and freedoms that I personally enjoy,” she admits. Ladau’s bullet points are richly detailed and create an overview of a history of disability in the United States. I found myself longing for a similarly clear and concise history of what that would look like in other countries, including India. 

Before I read Demystifying Disability, I strongly believed that psychiatry was historically designed to control women and others from historically marginalised groups. The traditional language of psychiatry is essentially villainising in a way that works against the development of queer and neurodivergent folks. I felt that dread when reading my own test results, which I found particularly disturbing. In the moment, to feel better, I made an AI tool to help me make it more polite. 

What I didn’t do was think of the possibility that language is just language and that it can be framed differently for us in a way that does not harm us. 

In her fourth chapter, “Ableism and Accessibility,” Ladau breaks down, in simple terms, the harms of ableism. Ladau defines ableism as “discrimination and prejudice against people with disabilities.” Very simple to understand, but very difficult to break out of. In the same chapter, she also talks about accessibility and different ways of making it work. 

Here are some examples of these accommodations, which I found striking: 

In her fifth chapter, she explains disability etiquette and how best to use it. This involves a list of things to not say and actions to not take for people with various disabilities: from “don’t stare, but don’t make a point of looking away” to “don’t pretend you ‘get it,’” this is full of clear and useful context. It also helps explain why we should call out ableism when we encounter it, especially to non-disabled people who are trying to be allies. 

Finally, Ladau writes about how media portrayals of disability can be polarised: either sensationalising "inspirational" achievements or depicting disabled lives as tragic. For example, inspirational stories about overcoming disabilities can perpetuate ableist notions by suggesting that disabled people’s worth is measured by their ability to surpass their impairments. Similarly, tragic depictions frame disability as a profound misfortune, as seen in old-school telethons that once treated disabled individuals as pitiable charity cases. 

These portrayals contribute to the broader issue of "inspiration porn" and "pity porn," where disability is used to elicit emotional reactions rather than fostering genuine understanding. Effective media representation should humanise disabled individuals, avoiding the extremes of superhuman feats or tragic victimisation, and should challenge ableist stereotypes rather than reinforce them. 

I recommend Demystifying Disability for everyone who wants that demystification. As my review has shown, it can reflect your own experiences, whether you live with or without a disability.  

Rolie Breja is currently at the Godrej DEI Lab working as a Video and Design Executive. She likes to know about things, and to write about them. The need to work in an inclusive place led her to work in a space that is dedicated to making the ecosystem inclusive. And now, she is using her training in art and media to contribute to it. In her free time, she reads, records and writes.