* Annual subscriptions are on sale in July and August - $40 for a full year! *
Here are your three disability-related links for Tuesday, July 2, 2024.
1. On Being Told To Live Independently
Ainaa Farhanah, SpinalMuscularAtrophy.net - May 3, 2024
“For those offering me advice: For the time being, can we just take a chill pill and be grateful for what I can do now? I appreciate the kindness in making me live independently but there’s a limit to everything.”
I feel these comments very deeply and personally. And I know that lots of disabled people probably feel them even more intensely and painfully than I do. But what I found missing from them was something along the lines of this quote which I have always seen attributed to the late disability rights leader Judy Heumann: “Independent living isn’t about doing things by yourself. It’s about having control over how things are done.” Basically, a person who needs 24 hour assistance because of a disability can still be independent if they are still calling their own shots and running their own lives. And it seems to me disabled people, especially young disabled people, endure a whole lot of unnecessary pain, guilt, and feelings of failure because of this fundamental misunderstanding — that independence means not needing or using help, and somehow doing the impossible out of sheer will. That’s not independence, at least not the kind that disabled people need to strive for, or that non-disabled people should expect or demand from us.
2. My daughter has a disability. This is the reaction from strangers I hate the most
Catherine Shields, Today - June 20, 2024
“My 40-year-old daughter has cerebral palsy and an intellectual disability. Over the years, I’ve lost count of the number of times I’ve heard, ‘God only gives special needs children to special people.’”
There is a lot to talk about in this piece by a parent of a disabled daughter. As parent essays go it’s pretty good, and the author seems, thankfully, to be tuned in to a more progressive, accepting understanding of disability. But I can’t help focusing on the type of comment she hates. What makes them so distinctive, and widely despised by disabled people and their families? I would say it’s their superficiality, their pious, syrupy sweetness, and, frankly, their rather awful theology. These comments almost always either mention God directly, or allude to some kind of religion or system of spirituality. And what they suggest is terrible, not lovely as they are intended — that God imposes hardships on people to either test or demonstrate their virtue. That, or that God fairly doles out hardship based on personal capacity. These are bad theologies because they are manifestly untrue for millions of disabled people and their loved ones. They are also corrosive and toxic because they imply that if disabled people and the people that care about them aren’t coping well, then it’s a failure on their part — like letting God down. I’m surprised that organized religions don’t do more to discourage their adherents from making these out-of-line comments. Their use is, in addition to being cruel, rotten PR for religions themselves.
3. How Religion Impacted My Growing Up With a Disability
Greg Moomjy, New Mobility - May 1, 2024
“As a child, I was prayed over at my first church service, in the hopes of a miracle cure — a Kool-Aid I unfortunately drank. I thought I would one day hear a basso profundo voice, booming from the sky: “Gregory, thou shalt walk!” Funnily enough, I never thought to pray more or do anything special to comply with our bargain. I expected to be cured because that’s what was promised. Thus began my tempestuous relationship with God, which I now realize reflects my struggle to relate to my disability.”
This piece has a lot more to say about religion and disability. It describes more examples of how religious habits and lore are used in well-meaning, (probably), but toxic ways that make disabled people feel worse, or at least deeply confused, rathe than better. But it also shows how disabled people who have and need faith and theology in their lives can offer more healthy, affirming versions of religion and disability. I won’t call the essay the “I” word. Let’s just say it’s encouraging.
Disability Thinking Weekday is a Monday-Friday newsletter with links and commentary on disability-related articles and videos.
Please like, share, comment, and subscribe — for free, or with a paid subscription. And for the months of July and August, full year subscriptions are on sale for just $40!
Benefits of paid subscription include:
A monthly recap with links to all of the previous month's shared articles, organized by topic.
You can recommend one disability-related article for me to share per month in a weekday post.
Access to the complete archives.
I am so grateful for your help and engagement, in whichever forms you choose!
Hi,
I was recently on a panel at a disability conference with Michelle Hewitt from Disability
without Poverty. Our event was called "The Quiet Reinstitutionalization: Young People with Disabilities in Long-term Care." Michelle made a point which stuck with me. She said that being independent means being supported to live in her own home and that the people who help her do things the way she wants them done.
Michelle gave a small, personal example -- she said that if she directs a support worker to put the red shirt on top of the blue shirt, then the red shirt goes on top, and not in any other order that the support worker might prefer to do it. That way, Michelle is in charge and living independently.