I think often about the r-word and also the s-word (spazz) — both descriptions that were casually applied to me in my middle school days. I think that the insult-power of the r word is its association with intellectual disability, which remains highly stigmatized.
Our society equates people’s value with their intelligence. I hope that the fact that computers are getting “smarter” will undermine this tendency. But I fear that the pressure to keep up — to be sharp, to be optimized — is causing people to see intellectual disability as a kind of existential threat.
There’s an eerie tension in the modern world: the more we idolize intelligence, the more we dehumanize those who don’t conform to narrow definitions of it.
Thank you for calling out the threat to Medicaid in your Substack and Truthdig articles. I'm really concerned about what will happen to Medicaid waivers for in-home care of medically fragile children. Over a period of years Oregon (my state) has been slowly terminally starving its only skilled pediatric nursing home in favor of in-home care paid for by Medicaid waivers. If Trump yanks the waivers these parents will be left with no in-home care and no suitable nursing home alternative. Caring for medically fragile children is not like caring for elderly adults so adult nursing homes are not appropriate placements. Parents of these kids will simply be up shit creek. I really doubt Oregon will back fill the money to continue in-home care or force the Sisters of Providence to resurrect their once stellar pediatric nursing home. The same ugly situation is likely to play out in other states too. I plan to go to my state senator's town hall in April with some pointed questions but I'm not expecting to hear anything hopeful.
Yeah, Freddie de Boer really blew it when he tried to defend stigma as more or less benign. He's a really interesting writer and generally worth the $5 or whatever I pay a month but sometimes his essays leave a bad taste in my mouth.
I'm another member of the Ezra Klein fan club. Maybe you can convince him to bring you on his podcast to talk about disability and politics?
I really enjoyed your post and plan to check out Signal Hill. Thank you.
I was delighted to see you post something on Substack again. For some reason, I was thinking about your book and its impact in my life only two days ago.
Your concerns about the legal protection of disability rights is one I share with you. My daughter Sarah was born with a rare craniofacial diagnosis called Apert syndrome, and I have wondered what the effects of these executive mandates will have on her. She just turned twelve yesterday, and so far, we have received excellent care and treatment for all of her complex needs, ranging from educational to psychological to medical and therapeutic (like occupational and physical therapies).
I appreciate the way you are speaking into this right now.
I think often about the r-word and also the s-word (spazz) — both descriptions that were casually applied to me in my middle school days. I think that the insult-power of the r word is its association with intellectual disability, which remains highly stigmatized.
Our society equates people’s value with their intelligence. I hope that the fact that computers are getting “smarter” will undermine this tendency. But I fear that the pressure to keep up — to be sharp, to be optimized — is causing people to see intellectual disability as a kind of existential threat.
There’s an eerie tension in the modern world: the more we idolize intelligence, the more we dehumanize those who don’t conform to narrow definitions of it.
Thank you for calling out the threat to Medicaid in your Substack and Truthdig articles. I'm really concerned about what will happen to Medicaid waivers for in-home care of medically fragile children. Over a period of years Oregon (my state) has been slowly terminally starving its only skilled pediatric nursing home in favor of in-home care paid for by Medicaid waivers. If Trump yanks the waivers these parents will be left with no in-home care and no suitable nursing home alternative. Caring for medically fragile children is not like caring for elderly adults so adult nursing homes are not appropriate placements. Parents of these kids will simply be up shit creek. I really doubt Oregon will back fill the money to continue in-home care or force the Sisters of Providence to resurrect their once stellar pediatric nursing home. The same ugly situation is likely to play out in other states too. I plan to go to my state senator's town hall in April with some pointed questions but I'm not expecting to hear anything hopeful.
Yeah, Freddie de Boer really blew it when he tried to defend stigma as more or less benign. He's a really interesting writer and generally worth the $5 or whatever I pay a month but sometimes his essays leave a bad taste in my mouth.
I'm another member of the Ezra Klein fan club. Maybe you can convince him to bring you on his podcast to talk about disability and politics?
I really enjoyed your post and plan to check out Signal Hill. Thank you.
Andrew,
I was delighted to see you post something on Substack again. For some reason, I was thinking about your book and its impact in my life only two days ago.
Your concerns about the legal protection of disability rights is one I share with you. My daughter Sarah was born with a rare craniofacial diagnosis called Apert syndrome, and I have wondered what the effects of these executive mandates will have on her. She just turned twelve yesterday, and so far, we have received excellent care and treatment for all of her complex needs, ranging from educational to psychological to medical and therapeutic (like occupational and physical therapies).
I appreciate the way you are speaking into this right now.