6/10/25 - A loss close to home, disability and the death penalty, and processing everyday ableism

Hello everyone ...

I want to start today by acknowledging the passing of Denise DiNoto, one of this newsletter's longest subscribers, and a well-known and loved disabled activist here in New York State, where I live. Here is what the New York State Independent Living Council said of her on its Facebook page yesterday:

It is with profound sorrow that we announce the passing of Denise DiNoto, who dedicated a year of her beautiful life to serving as Executive Director of the New York State Independent Living Council, advancing our mission and inspiring countless lives. Prior to NYSILC she served as Program Manager for the Department of Health’s Disability & Health program and worked for 10 years at Consumer Directed Choices as an outreach specialist. In 2017, Denise received the Beacon Leadership Award from the Independent Living Center of Hudson Valley for lifetime efforts advocating for the rights of people with disabilities.

Denise found joy in life - she savored the company of her friends and family, traveled, and found delight in service to others. She was a stalwart advocate, telling her personal story with openness and intention to teach others about the injustices disabled people face and advance disability rights. She described herself as, “Advocate, Rotarian, Writer & Speaker who happens to be a chick in a chair.” She was known for reminding the world that she was “too sexy for a nursing home.” The Council had the privilege of knowing her. Denise will be missed and we extend our heartfelt condolences to her family, friends, and the community she cherished.

There are millions of disabled people like Denise, who are foundations of strong, vibrant disability communities all over the world. But the passing of each of them is, as with Denise, a loss to us all.

The first of today's links discusses some possible broader implications of Denise's death.

Home caregiver claims CDPAP payroll delays led to fatal lack of care for her patient

Briana Supardi, ABC 6 News Albany - June 9, 2025

I had this local TV station's story all ready to go, except for a quote and my commentary. But all of a sudden it's not available on the station's website. I don't know if that's a technical glitch or because the station decided to pull it. Essentially, the story was about how one of Denise's personal care aides wasn't able to get to her yesterday or the day before, (I'm not sure about the exact timing), because the new management company running the program hadn't paid her in weeks, causing the aide to lose her car and making her unable to get to Denise. So it looked like Denise's death may have had a something like a specific cause, related to policy changes designed to save the state money and curb "fraud and abuse" of the consumer-directed home care system. Of course, it's possible the actual situation may be a lot more complicated than that. But I find it entirely believable that at the well-documented chaos that has ensued from this shift away from local non-profit management of the home care program to an out-0f-state, for-profit company at least contributed to Denise's passing. I hope we learn more about this soon. In the meantime, I'm leaving the link as it was in case it's just a technical problem.

Supreme Court to consider use of multiple IQ tests in determining death penalty

Maureen Groppe, USA Today - June 6, 2025

"U.S. District Judge Callie V. S. Granade called the evaluation of Smith’s mental functioning a 'close case' but wrote 'the evidence indicates that Smith’s intelligence and adaptive functioning has been deficient throughout his life.'"

I used to worry that advocating for people with intellectual disabilities to be exempt from the death penalty would do some kind of damage to the cause of asserting intellectually disabled people's respect and agency. But at this point I think that's more of an academic, theoretical concern. It's outweighed by the double horror of state-sponsored killing of people who may not fully understand what they did and what is happening to them. The specific legal issues discussed in this article are mostly above my pay grade. But my instinct says that it's bad for the Justice Department to be arguing that executions are okay for people who are on the margins of a particular measure of intellectual disability. I am against the death penalty in all cases. If it's possible, I am twice as against it for people with intellectual disabilities or other significant cognitive impairments.

A Story About Not Being Sorry About My Disability

Kelly Mack, Rolling with it - June 5, 2025

"It occurs to me that perhaps there is no winning. When someone approaches disability from the pity mindset there is no combination of words I have found to defuse the breadth of their ignorance and prejudice. I can only turn away and live my life ... The fact is that I am not sorry about my disability and never have been. I am sorry about inaccessibility, ableism, and prejudice. My life with a disability is beautiful and unique. It is hard navigating these artificial barriers that people (and society at large) construct. Without them, my life would definitely be much easier. But my life with a disability is just plain gorgeous, thanks very much."

This is a personal story. But can also serve as a practical guide for disabled people who have to figure out how to process everyday ableism, especially the intrusive kind that comes at us out of nowhere, often from people who technically mean no harm.

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