Dedicated to Improving the Lives of Blind and Visually Impaired People

Recent and Ongoing Happenings in the Usher Syndrome and Deaf-blind Communities

by Daniel Parker, RDPFS Intern

As March 2nd is the birthday of Charles Usher, the ophthalmologist for whom Usher Syndrome is named, it is timely to discuss new and significant developments in the Usher and broader deaf-blind community. First, the Usher Syndrome Coalition (USC) has launched a new community server (chat room) on Discord, a popular voice-, video-, and text-chatting app. Discord is primarily used to organize chats around certain groups of people, such as family or friends, or around a given topic such as a game, content creator, or, as in this case, a broader community. Created by volunteer Ryan LaPierre, the server is “a safe space for those with Usher syndrome worldwide to connect.” Anyone over the age of 13 can join Discord free of charge. Users usually join a Discord server by invitation, often through a link, although an account is needed prior to joining. In order to activate the link to join this server, you must be signed into Discord on your device. Once that is in place, here is the link to join the Usher Syndrome Discord server.

New York State Legislation Supporting CoNavigator Services

In news relevant to the entire deaf-blind community, pending legislative bills in New York would secure additional funding for deaf-blind individuals to get CoNavigators, formerly known as Support Service Providers (SSPs). According to the American Association of the Deaf-Blind (AADB) and New York’s Program of Deaf/Deaf-blind Services, CoNavigators allow deaf-blind people to live more independent lives. For example, they may help a deaf-blind person shop and do other errands, complete other necessary travel, and visually describe their environment. New York and Washington are two states that offer these services, and the new proposals aim to increase allocated funding from the state government to make the services more widely available. It was introduced in both the New York State Senate and the New York State Assembly. You can find more information and the full text of each bill at the two links above.