Three more disability-related links for Wednesday, September 18, 2024.
1. What went wrong?
Peter Torres Fremlin, Disability Debrief - September 11, 2024
“In order to move forward we need a shared reference on what happened. It's painful to explore, but without knowing what went wrong, we don’t know what needs to be fixed.”
This is an extremely informative, thought-provoking, and well-reported account of problems within an international disability rights organization. The author, Peter Torres Fremlin, mentions towards the end that it was painful for him to write the article, and that many people will likely feel uncomfortable reading it. But I suspect that far more people will feel a kind of relief. The problems in this case are I think familiar to people who work in disability organizations, including many of those led by disabled people. Of course, these are problems that exist in plenty of non-profit organizations not specifically related to disability. But I think that we need to look at some of the ways disabled people can come into organizations bringing with them not only their valuable life experience and passion for disability rights, but also some potential weaknesses. These can almost always be accommodated or fixed. But for that to happen they have to be acknowledged. I’ll share Peter’s followup article tomorrow, and maybe add some more of my own thoughts on what all this suggests for disability organizations and how disabled people specifically function within them.
2. Do You Need a Diagnosis to Be Disabled?
Kelly Mack, Rolling With It - September 12, 2024
“Yet in many ways I am fortunate because no one (until recently — more on that later) has questioned the fact that I have a disability and need accessibility accommodations. For people with non-visible disabilities to be continually questioned and have to defend their needs, it must be absolutely draining, exhausting, and unnecessarily repetitive … So, I think it is worth exploring more in-depth the definition we have adopted in the United States as the broadest definition of disability and what it means and does not mean.”
Here is an excellent breakdown of two main ways of “officially” defining disability and determining who is disabled. Kelly Mack first notes the difference in experience between people with very obvious disabilities who rarely have to prove their disabilities, and those with invisible or less well defined conditions who are quite often questioned, doubted, and accused of faking. Then she lays out the important difference between defining disability in terms of specific diagnoses and lists of conditions, and defining it in terms of practical and social effects. Some of it won’t be new to people steeped in the Americans with Disabilities Act and how it defines disability. On the other hand, even veteran ADA watchers can sometimes benefit from a refresher on just how important its way of defining disability has been.
3. When Disabled Adults Care for Disabled Youth, Everyone Prospers
Jacklyn Lewis, Rooted In Rights - August 23, 2024
“When we talk openly about the day-to-day of disabled life, the youth see that there is a future for them – one that doesn’t involve succumbing to the messages they get about their worth, what’s normal, or what they are and aren’t capable of.”
I have been saving this article for awhile, because the title intrigued me. I’m glad I did, and glad I finally read it to share here. These are reflections on serving as disabled adult peer mentor / leader in a program for disabled youth. It’s written from the perspective of a specific arts-based program. But the experiences. challenges, and rewards Jacklyn Lewis describes should be familiar with anyone who has worked in a disability organization run by disabled people — as I have working at a Center for Independent Living. When disabled staff at these organizations truly share of themselves and their own disability experiences, the results for disabled youth can be almost magical. At the same time, I have also learned that the magic doesn’t always happen, and happens differently for each person. And simply putting disabled adults and disabled youth together doesn’t guarantee success. At the very least, the disabled staff have to be deeply aware of what they are doing, and always conscious of the examples they set by the way they do their jobs.
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I am so grateful for your help and engagement, in whichever forms you choose!
Thanks for the mention Andrew!