Book cover of Demystifying Disability by Emily Ladau

"Demystifying Disability" by Emily Ladau

I need to start by saying the book "Demystifying Disability" By Emily Ladau has a gorgeous cover - it show a variety of people with disability across different ethnicities: people who use a wheelchair, who have a bionic leg, people who have a hearing aid, people who have a guide dog and more. It's a wonderful portray of the reality of being human.

The author does a great job at breaking down disability and the myths around it. I do recommend this book for anybody who is new to the topic, but equally for those who are familiar with it. There are many great gems and pieces of information. 

1. Definition of disability and how to talk about it

Outside of providing the main definitions, sharing both the health model and the social model, the author shares definitions from real people. My personal favourite was from Liz Weintraub so who shares "Disability means that there's something people can't do. I believe that there's something everyone can't do as well as they would like, except that people with disability have a label. But i am very proud of my disability, because that's who I am."

When it comes to talking about disability the author shared the two main frameworks: Person-first language and Identify-first language. As an example for the first you would say "person with a disability" for the latter you would refer to "disabled person". People might have a preference of one vs the other. When in doubt which one to use the author recommends to default to person-first language unless you have been informed otherwise, as well as you can always ask or pay attention to how the person might be referring to for themselves. 

Capitalizing things (such as Deaf, Autistic etc) means that the person identifies as belonging to a broader culture and community.

Do not refer to people as their mobility equipment. The author shared she has been referred to many times as "the wheelchair". If that sounds wrong, it's because it is. Instead you can say person using a wheelchair. Also, doubt say things as confined to a wheelchair. The equipment aids a persons mobility, it's what helps them not what holds them back. 

Get comfortable in saying DISABILITY. Terms such as differently able, handi-capable, etc are terms abled people have developed in order to feel better when speaking about disability. Call it what it is, anything else is frankly rude. It's not making the person with disability feel better, it's just giving you a false sense of comfort. 

Rethink your normal. What is normal anyway? Averages? I wear glasses, I cannot see without them. My partner doesn't. What is normal? Is it me or him? 

Pay attention to the things you say. There are A LOT of phrases and words ingrained in every day speech which are very hurtful or making it seem like people with disability are less. You might not observe them at first but pay attention to sayings like "that's insane / crazy", "falling on deaf ears", "it's like the blind leading the blind". I used to say "it's crazy" A LOT. I am now trying to pause more and thinking before I speak. I have also failed at times and used expressions which were not inclusive. I felt horrible about it. I learnt the best way is to admit you used a non inclusive expression, apologize, move on and do better next time. We will also be guilty of it, but it's how we address is and improve that makes a difference.

2. Types of disabilities 

There are many ways to categorize disabilities:

  • visible and invisible 
  • born with or acquired later in life, some can be temporary 
  • hearing, speech, visual, mobility, learning, mental health

3. History of disability

If i could summarize this, it would be "it ain't pretty". People with disability have suffered from inhumane treatment for a very long time. Equality hasn't even been part of the conversation until recent decades and there is still long way to go. 

4. Ableism 

The author describes ableism as "attitudes, actions and circumstances that devalue people because they are disabled or perceived as having a disability". Here are some examples from the book to exemplify it:

  • Less than 25% of New York City subways stations have elevators. That is of course an issues for a lot of people with disability and limits their access to public transportation 
  • Rideshare drivers regularly refuse rides to people who use mobility equipment or have a service animal 
  • Hundreds of thousands of people with disabilities are forced to live in institutionalized settings instead of in their communities 
  • Nondisabled people, especially medical professionals, often assume people with disabilities want to be "fixed" or "cured" instead of living with their disability 

5. Disability etiquette

  • Don't give unsolicited advice, don't be rude and keep comments to yourself.
  • Do not touch a person or their assistive technology without their explicit consent and make sure you ALWASY ask first. That includes guide dogs. Yes, they are cute, and yes they are cuddly, but as Emily explains they are there do to a job. Distracting them can be very dangerous to themselves and their owner. 
  • Communicate as you would with anybody else. Don't shout. Don't refer to somebody accompanying them instead of them, talk directly. If a person has a sign interpreter look at them when talking to, instead of their interpreter. 
  • Do not take action or try to help without asking first. This one reminded me of a story of a Blind gentleman who was sharing that at crosswalk some random person took lead and forced them to pass the street. They had no intention of passing, that act broke their sense of special awareness and overall was quite frightening. Imagine minding your own business when somebody takes control and forces you to do something. If you wish to help, ASK first if the person needs your help.
  • Don't stare, don't point.
  • Don't offer prayers. Emily has a both funny and sad story in her book on this one, I won't spoil it, but suffice to say don't start praying over people being cured. Keep that to yourself if you really must. 
  • Don't assume someone's disability status. Assumptions in general are best avoided when it comes to most things I would say.
  • Don't use accessible amenities. The author adds if you don't need them. I would go ahead and say just don't. No, it's not ok to use the parking space means for people with disability "even if it's for 5 mins". 

6. Disability in the media 

Representation matters, and the reality is there is little to no representation of people with disability in the media. More often than none, disability is portrayed as one-dimensional and pity worthy. The author shared the term coined by Stella Young as "inspiration porn which is a 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". It's patronizing and you should find other ways to make yourself feel better. The latter part is my own input. 

7. Conclusions 

Everyone can be an ally. Also if nothing else, you might want to think about the fact disability affects everyone during their lifetime - either directly or through a person their know. To be an ally use your privilege to pass the spotlight on those who need it. Don't pretend to understand it and know it all, continue to educate yourself on the topic, listen to people with disability. If you make mistakes, admit them and apologize. As the author says "it's the journey, not the destination".

I will repeat myself but I encourage you to read Emily Ladau's book and then pass it on to a friend. All of us should be talking about it. 

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