Regarding the *Amended* Communication Bill of Rights in New York

Dear Senator Fahy and Members of the Senate Disabilities Committee,

My name is Cheyenne, and I am a Care Manager in Wisconsin. In my role, I support people with a variety of disabilities, including individuals who use alternative communication methods. I have also worked in a range of roles supporting autistic people and others with disabilities.

I am not from New York, but I have been closely following this proposal as a potentially visionary piece of legislation with wide-ranging impacts. Its ripple effects have the potential to set a precedent for advancing the rights and dignity of disabled citizens in other states as well. 

I am writing because I believe communication is a human right. Please, do not cheapen our rights by making others prove they are worthy of them.

While the Communication Bills of Rights has been a beacon of hope and inspiration, it has been amended in a way that disenfranchises the most vulnerable among us. I am deeply concerned about the inclusion of language such as “autonomous” and “validated,” language which purports to qualify who does and does not deserve access to communication and the rights contained within this bill.

I have sat beside nonspeaking individuals as their bodies pulled them away, and still they communicated. Whether through writing, spelling, typing, or electronic AAC devices, they communicated—not just wants and needs, but emotions, feelings, and memories. Memories of being questioned and disbelieved. Of being trapped not only in a body that would not cooperate, but in a world that did not believe them.

It is disappointing that such amendments were put forth in response to testimony from systems and agencies that do not know the intimacy of this issue. Systems and agencies that have historically not been able to help many nonspeaking people communicate effectively should not be the ones determining which communication methods are considered valid or acceptable. 

Have you met a nonspeaking person? I have personally seen a variety of communication methods used by children and adults with a wide range of disabilities, needs, and support levels. Different forms of communication are accessible to different people. Different forms of communication are accessible at different moments. Denying equal access to communication based on doubt from the very institutions that have failed them perpetuates harm and inequity.

It is deeply troubling to suggest that bureaucratic systems know more than the people, families, and support teams who have fought to be heard.

People who have been silenced long enough deserve protection, not more gatekeeping. Decades of progress and research were lost to institutionalization, infantilization, and ignorance. People deserve better, and we need you right now. Please oppose the amended version and restore the original intent of the bill.

Sincerely,

Cheyenne Ver Voort, B.S., M.Ed.