Since her comments calling the Consumer Directed Personal Assistance Program a “racket,” Governor Hochul has continued to demonstrate ableist behavior by ignoring multiple communications from leaders within the Disability community. Despite our consistent attempts to maintain open lines of communication between ILCs and Gov. Hochul’s administration, the Governor has not apologized for her harmful comments towards Disabled New Yorkers. This avoidance of Disability community leaders coincides with the Governor’s ADA Anniversary event, showing just how far Gov. Hochul and her administration are willing to go for the appearance of inclusion without genuine respect for the lives of her marginalized constituents. Governor Hochul’s lack of response, let alone an apology, shows that while she is willing to tokenize our community to create the appearance of progress, she has little interest in actual communication.

Bruce Darling, CDR CEO/President, sent the following to Gov. Hochul’s office on Sunday morning, July 28:

I have been working diligently to open and maintain lines of communication between the Hochul administration and the Independent Living Centers, the STATE’S ONLY NETWORK OF DISABILITY-LED ORGANIZATIONS. We have a history in Rochester that goes back to September 1966 when Disabled students protested Governor Rockefeller for the lack of access in the SUNY network.

First, I must reiterate that the Governor’s statement describing Consumer Directed Services as “a racket” was wildly offensive. When we expressed that, it would have been appropriate for her to meet with us and apologize. By sitting down with us she could have heard how her words hurt us and damaged our movement. She may not have intended to be ableist and offensive, but in that case, she would have met with us, listened, and apologized. Instead, she has refused to meet with us. She now appears to be deliberately doubling down by ignoring leaders in the Disability Community. I can only conclude that Governor Hochul’s words and actions are based in ABLEISM and DISRESPECT.

Perhaps Governor Hochul just doesn’t recognize Disabled individuals as a marginalized community of people, and – instead – sees us as broken people incapable of having community, developing services that meet our community’s needs and managing our own organizations. She may feel that the only role appropriate for us is a tokenized and subservient role. This is ableist.

Governor Hochul needs to recognize how her attitudes toward Disabled people are comparable to those of men who dismissed the idea that women could make their own decisions and – gasp – vote or run for office. Remember that at one time it was generally understood that women needed men to make decisions for them because women were unable to do this on their own.

Governor Hochul needs to recognize that putting our Disability-led organizations in a subservient role to a single corporation essentially makes us share-croppers. We will work, but not benefit from our labor, with profits benefiting those that oppress and marginalize us, instead of being reinvested in and uplifting the Disability Community.

That clearly wasn’t a mistake. CDR communicated our appreciation that the ILCs would remain full fiscal intermediaries highlighting the budget language that authorized this. Governor Hochul’s administration clearly used this information to scrub out that budget language, weaponizing our appreciation against us.

Maybe Governor Hochul doesn’t understand that marginalized people develop services and systems to meet their own needs. As a 59-year-old gay and Disabled man, I have some perspective on this. I remember back in the 1989s when LGBTQ+ folks in Rochester developed services to support and treat people with HIV/AIDS – which at the time was referred to as Gay Related Immune Deficiency. The LGBTQ+ community developed services when no one else cared about us.

Disabled people did the same thing. Disabled people reliant on home care found themselves limited in their lives by agencies who didn’t recognize their autonomy. In many cases, folks with significant disabilities were forced into institutions or died because they were unable to get the assistance they needed. Disabled people created the Consumer Directed Personal Assistance Program – then called Patient Managed Home Care. I personally was involved in the enactment of the state law mandating the program. In both cases, marginalized communities developed services. The fact that Governor Hochul is dismantling the network of Disability-led fiscal intermediaries can be attributed to an ableism deeply ingrained in her thinking.

Governor Hochul may simply disrespect Disabled people. She may understand the implications of what she is doing and just not care. Instead of engaging us, the Governor is cutting out leaders in the Disability Rights and Independent Living Movement.

We have been forced to rely on third parties to communicate our message. I understand that SEIU explained the importance of and communicated support for maintaining the ILCs as full fiscal intermediaries. After communicating with the administration, they shared that their recommendation to maintain the ILCs as full FIs was not being accepted by the Governor who seemed intent on eliminating us in that role.

I understand that the administration would want to point out the Governor’s ADA Anniversary Event as an example of her respect for our community. Please do not do that.
We all know an example of someone whose public life was disconnected from his personal beliefs. Governor Hochul’s predecessor may have been presented publicly as a feminist, but as you would all know, he completely disrespected women.

His disrespect (and worse) was enabled by sycophants and those who wanted to secure his favor. It is easy to dismiss us because others are not expressing equal levels of offense, but Governor Hochul is demonstrating to everyone that she controls the purse strings. She is in charge. Others know that what is happening to the ILCs can happen to them. I am both highlighting a mechanism that shields people in power from concerns or complaints and gives bullies – and politicians – their power. Her actions may be based in self-interest, but demonstrate disrespect.

The ADA Anniversary event is tomorrow. Governor Hochul needs to address this immediately.

With still no response from Gov. Hochul or her administration this morning, July 29, Darling sent the following addressed to the Governor’s representative:

I want to remind you that the “criminalization” of marginalized people is a technique used to oppress us and delegitimatize our complaints. For example,
• Gay men were portrayed as pedophiles;
• People of color face such pervasive bias they can be arrested for “walking while Black”;
• Conservatives are passing laws to criminalize trans folks use of a restroom; and
• Some immigrants – including those who were brought here as children – are themselves labeled “illegal”.

The allegations of fraud in home care have been historically weaponized against people with disabilities and their workers (many of whom are people of color). Now the Governor has described a program developed BY Disabled People that keeps/gets Disabled individuals in the community and out of institutions as “a racket”.

Attendant service users and our workers are NOT part of a criminal enterprise!

Governor Hochul’s words have taken the criminalization of Disability to a new level. The Governor needs to take responsibility for what she has done and make this right.

As the Governor’s representative, your non-response is a response. It tells us that Governor Hochul is refusing to take responsibility for her words and actions.

Bruce Darling’s invitation to the Governor’s Disability Pride event today has since been withdrawn.

Without further additional communication from Governor Hochul, we must assume a lack of communication is her message, and that she has no interest in hearing our concerns. With that in mind, we will be ensuring that our concerns are heard by making ourselves impossible to ignore. Members of the Disability community are encouraged to attend a protest taking place today, July 29, at 4:00pm outside the Governor’s Mansion. It is wildly inappropriate and unacceptable for Governor Hochul to be holding a Disability Pride event while simultaneously ignoring the voices of the Disability community and threatening Disability-led programs; if she is going to be hosting this event, we will guarantee that our voices are heard and make our frustration known.

We look forward to Governor Hochul’s response to our meeting requests.