Review: Demystifying Disability: What to Know, What to Say, and How to Be an Ally

Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau
My rating: 5 of 5 stars

As both a mother of a developmentally disabled child and as a clinician who works only with this group, I found this book to be a new and helpful tool for all of us. It is helpful to me when advocating for my son but also as a clinician who cares about the population that I serve. It would be a great resource to the staff and families who care for this group as well. Reading through the history of the treatment and access to basics like education was interesting. It is incredible how far things have come, albeit, slowly. I have worked in a facility (similar to Willowbrook, but not with the terrible conditions) and have seen the pros and cons of this institutional approach. Our facility has also closed and seeing the lives that the former inpatients, now community residents, are living has been a blessing.
I think my favorite quote from this book and takeaway message is: "Disabled lives are worth living." This couldn't be more obvious of a point and yet more necessary of a point. Sadly, many people consider disabilities as a reason to not give the same care or consideration or respect to those who are affected by the disabilities, as they would give to an abled person. I have come across this many times in my work. In caring for some of the most profoundly intellectually and developmentally disabled folks, I have seen other healthcare providers fail to act as though these are people, often claiming "poor quality of life" (their presumption because the patients are different from themselves) as a reason to not give the same urgent care. And yet, I can say that there has never been one person with a disability that I have interacted with who was not worthy of love, respect, and dignity. I think this is a message that we all need to keep close when saying, thinking, or doing something that might be disrespectful to this community. Then apply the same to all communities, even those different from ourselves. As with most people, we find some common ground in which to build a relationship and that is no different here.
Thank you for the eARC and good luck to the author on her writing and her advocacy.
Highly recommend. I will have this as a recommendation for all the caregivers that I interact with when seeing folks with developmental disabilities.


#DemystifyingDisability #NetGalley #TenSpeedPress

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