July 28, 2022. ADA Remarks by Jerry Bergman during “Disability Rights in New York State”
Sponsored by the NYS Division of Human Rights on July 28, 2022. In association with the New York Association on Independent Living, the Hearing Loss Association of America – New York State Association, and the Self-Advocacy Association of New York State
I’M HONORED TO SAY A FEW WORDS ON BEHALF OF PEOPLE WITH “SENSORY DISABILITIES.” BUT I MUST SAY UPFRONT THAT I KNOW VERY LITTLE ABOUT THE CHALLENGES FACED BY PEOPLE WITH BLINDNESS, OR THE CHALLENGES OF BEING DEAF OR LIVING WITH BOTH BLINDNESS AND DEAFNESS.
SIMILARLY, I SUSPECT PEOPLE WITH DEVELOPMENTAL DISABILITIES MAY NOT KNOW THAT 95 PERCENT OF PEOPLE WITH HEARING LOSS ARE UNFAMILIAR WITH AMERICAN SIGN LANGUAGE USED BY THE CULTURALLY DEAF, OR MAY BE UNFAMILIAR WITH THE ACRONYM C-A-R-T — WHICH STANDS FOR “COMMUNICATION ACCESS REAL-TIME TRANSLATION” OR SIMPLY LIVE CAPTIONING BY A TRAINED PROVIDER.
THE REALITY IS THAT ONE SIZE DOES NOT FIT ALL PEOPLE WITH DISABILITIES. DISABILITY IS A COAT OF MANY COLORS. AND THAT’S ONE REASON WHY WE CONTINUALLY URGE POLICY AND DECISION MAKERS TO “DO NOTHING ABOUT US WITHOUT US.”
I’M FORTUNATE TO HAVE LIVED IN THE HEARING WORLD UNTIL ABOUT 15 YEARS AGO, WHEN I ENTERED THE REALM OF THE HARD OF HEARING — AS WHAT WE CALL SOMEONE WHO IS “LATE DEAFENED.” THAT’S IN CONTRAST TO THOSE BORN WITH A HEARING DEFICIT OR WHO EXPERIENCES MILD, MODERATE, SEVERE OR PROFOUND HEARING LOSS IN THEIR YOUTH OR AS WORKING ADULTS.
AN ESTIMATED 48 MILLION AMERICANS — SOMEWHERE BETWEEN 15 AND 20 PERCENT OF THE U.S. POPULATION — HAVE MEASURABLE HEARING LOSS. ROUGHLY HALF OF THIS POPULATION IS UNDER AGE 65, INCLUDING BETWEEN 2 AND 5 OF EVERY THOUSAND CHILDREN, ACCORDING TO THE CDC. BY AGE 65, ONE OF EVERY THREE PEOPLE HAS MEASURABLE HEARING LOSS. AND BY AGE 75 ONE OF EVERY TWO HAVE HEARING LOSS.
SCIENTIFIC EVIDENCE ALSO POINTS TO A LINK BETWEEN UNTREATED HEARING LOSS AND A DECLINE IN COGNITIVE ABILITY AND THE ONSET OF DEMENTIA AND ALZHEIMERS DISEASE.
I WAS FORTUNATE TO FACE LIVING WITH PROGRESSIVE, SENSORINEURAL HEARING LOSS A NUMBER OF YEARS AFTER THE ADOPTION OF THE ADA IN 1990. I WAS EQUALLY FORTUNATE TO DISCOVER AND BECOME ACTIVE IN THE HEARING LOSS ASSOCIATION OF AMERICA, WHICH WAS FOUNDED 13 YEARS BEFORE THE ADA WAS ENACTED.
HLAA WAS ORIGINALLY KNOWN AS SELF HELP FOR THE HARD OF HEARING. “SELF HELP” IS NO LONGER IN THE NAME. BUT HLAA’S MISSION CONTINUES TO STRESS THE IMPORTANCE OF WHAT WE CALL “SELF-ADVOCACY.”
THERE’S NO QUESTION THAT ACCESSIBILITY HAS IMPROVED OVER THE LAST 32 YEARS. BUT THERE’S A LONG WAY TO GO — ESPECIALLY WHEN IT COMES TO ACCESSIBILITY FOR INVISIBLE DISABILITIES LIKE HEARING LOSS. AND WE WON’T GET THERE WITHOUT EDUCATION AND ADVOCACY, SO THAT DISABILITIES SUCH AS OURS ARE UNIVERSALLY ACKNOWLEDGED AND UNDERSTOOD, IN BOTH GOVERNMENT AND THE PRIVATE SECTOR, BY POLICY AND DECISION MAKERS.
THE ADA GAVE LEGITIMACY TO HEARING LOSS AS A DISABILITY. SOME OF ITS MAJOR COMMUNICATION REQUIREMENTS ARE:
- EMPLOYERS WITH MORE THAN 15 EMPLOYEES MUST PROVIDE “REASONABLE ACCOMMODATIONS” IN THE WORKPLACE ON REQUEST BY EMPLOYEES WITH HEARING LOSS.
- PUBLIC PLACES MUST PROVIDE THOSE WITH HEARING LOSS WITH ACCESS TO “EFFECTIVE COMMUNICATION,” MEANING VIA ASSISTIVE LISTENING TECHNOLOGY; C-A-R-T OR CAPTIONING; AND/OR ASL.
- HEALTHCARE SETTINGS LIKE HOSPITALS, CLINICS AND DOCTORS’ OFFICES ARE INCLUDED IN PUBLIC PLACES THAT MUST ACCOMMODATE PEOPLE WITH HEARING LOSS.
THAT’S THE INTENT. BUT, AS ROCKY STONE, HLAA’S FOUNDER SAID WHEN THE ADA WAS ENACTED, “THE LAW IS A TOOL WE MUST BE PREPARED TO USE IN ASSERTING OUR RIGHTS WITHIN ITS FRAMEWORK. WITHOUT OUR ACTION, THIS LANDMARK LEGISLATION WILL BE OF LITTLE VALUE TO PEOPLE WHO ARE HEARING IMPAIRED.”
TODAY, AGENCIES AT ALL LEVELS OF GOVERNMENT — SUCH AS THE STATE DIVISION OF HUMAN RIGHTS — EXIST TO HELP ACHIEVE THE PROMISE OF THE ADA. THEY TAKE UP COMPLAINTS — IF FILED BY INDIVIDUALS — TO SEE THAT THE LAWS ARE ENFORCED. AND THEY ARE ENCOURAGED BY ENLIGHTENED GOVERNMENT LEADERS, SUCH AS NEW YORK GOVERNOR KATHY HOCHUL. JUST TWO DAYS AGO, GOV. HOCHUL SIGNED INTO LAW BILLS TO INCREASE THE RIGHTS OF PEOPLE WITH DISABILITIES AND TO REMOVE NEGATIVE LANGUAGE SUCH AS “RETARDED” FROM STATE LAWS.
ANOTHER SIGNIFICANT PIECE OF LEGISLATION IS A BILL UNANIMOUSLY ADOPTED BY BOTH BRANCHES IN ALBANY TO ESTABLISH A COMMISSION FOR THE DEAF, DEAFBLIND AND HARD OF HEARING. NEW YORK IS ONE OF ONLY 12 STATES THAT LACKS SUCH A COMMISSION TO ADVISE LAWMAKERS, PROMOTE NEEDED SERVICES, FOSTER IMPROVEMENTS IN EDUCATION AND EMPLOYMENT, AND DISSEMINATE INFORMATION FOR GREATER PUBLIC AWARENESS AND UNDERSTANDING. OUR NEW YORK STATE COALITION OF THE DEAF, DEAFBLIND AND HARD OF HEARING IS CONFIDENT THAT GOV. HUCHUL WILL SOON SIGN THE COMMISSION BILL INTO LAW.
FOR TOO LONG, STIGMA, AS WELL AS A LACK OF UNDERSTANDING OF OUR RIGHTS, HAVE KEPT MANY PEOPLE WITH SENSORY DISABILITIES FROM EMBRACING THEIR CONDITIONS AND SPEAKING UP. IT’S TIME TO DEMAND MORE. I CAME OF AGE IN THE TURBULENT CIVIL RIGHTS DECADE OF THE 1960S. SO I’LL CLOSE WITH THE OFT-HEARD RALLYING CRY BACK THEN OF CIVIL RIGHTS LEADERS AND THE KENNEDY BROTHERS: “IF NOT US, WHO? IF NOT NOW, WHEN?”