December Newsletter

In mid-September, many of SILO's staff attended the New York Association of Independent Living (NYAIL) conference held in Albany this year. I learned that one of their keynote speakers was Emily Ladau, the author of the book: “Demystifying Disability, What to Know, What to Say, And How to be an Ally”, written in 2021. Though I did not get to attend the conference, I did read her book. It not only is available on Amazon, and other places you can buy books, it is also available through the National Braille and Talking Book Library Service, DB 105481. (Originally produced by Penguin Random House Audio for commercial use, the unabridged version has been adapted for the National Braille and Talking Book Library Service. Both commercial and NLS versions of the book are read by the author.)
Not only did the conference serve as a great way to get to know the author, but it allowed readers of her book an opportunity to get their copy of the book signed. Attendees learned that Ladau is a native Long Islander, and that she is no stranger to being in the public eye, appearing on Sesame Street, and now writing for ABLE News, published here on Long Island.
I was drawn to the book, for two reasons: First, in the introduction of the book, she mentions “if the disability community wants a world that is accessible to us, then we must make ideas and experiences of disability accessible to the world.” I think this is a very healthy approach to change. It suggests that we have the responsibility to make our world a happier place to live, not only for ourselves, but for generations to come after us. Also, it is done in a very neutral way. A way that is not biting people’s heads off. It does not blame anyone for things not being made accessible, but rather – and this has been my experience - wouldn’t it be better if... It is a good way for people to take a peek into a culture without thinking that, every time they encounter a person with a disability, they need to stop and ask the disabled person publicly some very personal questions, or maybe people will not stop and stare out of curiosity, or a yearning to learn, but will realize how rude it is, and how that can make a person feel uncomfortable, or self-conscious. The one thing we do all have in common is that we are human beings trying to get along. Emily emphasizes to live by the Golden Rule: Treat others as you would like to be treated, with respect. Be curious, ask questions, but be respectful first and foremost.
The second thing that drew me to this book is that I, too, lived with someone who had the same disability as myself. Emily’s mother has the same disability as she has. Though she claims in the book that she is not an expert on everything pertaining to disability, I would agree that it certainly gives you a lot of insight into the community of disabled folk.
She makes a good case for such a book with questions like: “Have you ever felt flustered trying to find the right words when trying to talk about disability? Have you ever shushed your kid for asking questions about a person in a wheelchair?” She goes on to not only challenge nondisabled persons to see things through the perspective of a person with a disability, but challenges people with disabilities to get to know the perspective of others that may have a different disability than themselves.
She is very open and honest. She admits how she, too, has been guilty of ‘ablism’, and how we really need to be aware of how we all can find ourselves falling into such behavior. It encourages the reader to be reflective of their actions, and to learn from one’s mistakes, keeping in mind that no one is perfect, that we all can push ourselves to improve.
Another important aspect is that she spends a good amount of time talking about the history of disability. What she describes is not the full history, but rather, events that occurred during the twentieth century in America that struck a chord with her. I would agree it is by knowing our history that we appreciate our present struggles, and the struggles of the past. It lets us know how far we have come, the accomplishments we have made, and what we still need to work on. It can help us set a course for the future. She brings attention to how, in a few states in our country, there is legislation making the history of disability part of school civil rights curriculum. Why is it not in every state?
In conclusion, I would recommend the book for all to read. Anyone reading will find it to be good information, especially those working in the field of disability. It is a good idea because, at some time in our lives, we will encounter someone with a disability, have a relative that has or acquires a disability, or we ourselves may acquire a disability. It gives a gentle, and even light, way to look at a sensitive topic. In many incidences through the book, Emily either finds herself overthinking not wanting others to get so bogged down about how to interact with people with disabilities that they avoid interacting for fear of being insensitive or discriminatory. I believe her intent is to help things feel more natural and comfortable with each other. I am reminded of the movie “Jerry Maguire”, when Tom Cruz’s character, Jerry, looks for mutual cooperation from Cuba Gooding Jr.’s character, Rod Tidwell, when faced with the task of finding Tidwell a football position deserving of Rod’s talents. “Help me help you,” I really believe that is the goal of everyone involved. We are not all born with all the knowledge we will need to survive in this world. Emily even states, giving credit to the famous Beatle song: ”We all get by with a little help from our friends.”
Giving personal narratives, written or spoken, can only help. Realizing being disabled is not anyone’s fault, and asking for something to be made accessible is okay. Emily’s words let others know, especially newly disabled people, that it is okay, they are okay, we are not alone in our struggles, that somewhere, someone out there thought and felt the same way about themselves and the environment they live in. It is an opportunity for all of us to talk it all out, to ask questions respectfully, and stand together, disabled and nondisabled, arm in arm, to speak up, to speak out for the things we need to be happier and find quality of life.