* This transcript was created by voice-to-text technology. The transcript has not been edited for errors or omissions, it is for reference only and is not the official minutes of the meeting. THE FOLLOWING PROGRAM [00:00:01] IS SPONSORED BY ILRU SOUTHWEST, A DA CENTER, PROMOTING COMPLIANCE WITH THE AMERICANS WITH DISABILITIES ACT. WELCOME TO FOCUS ON ABILITIES, A PROGRAM ABOUT ISSUES AFFECTING THE LIVES OF PEOPLE WITH DISABILITIES. I'M LEX FRIEDEN. I'LL BE YOUR HOST FOR TODAY'S PROGRAM. I'M PROFESSOR OF BIOMEDICAL INFORMATICS AT THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON, AND I DIRECT THE ILRU PROGRAM AT TIER MEMORIAL HERMANN. WE'VE GOT A GREAT SHOW FOR YOU TODAY AND A WONDERFUL GUEST, AND I'M LOOKING FORWARD TO INTRODUCING HER RIGHT AFTER WE TAKE A BREAK. BUT BEFORE WE DO, I WANT TO ASK YOU A QUESTION AND WE'LL ANSWER IT BEFORE THE END OF TODAY'S PROGRAM. HOW MANY CANCER SURVIVORS ARE THERE IN THE UNITED STATES TODAY? WE'LL GET BACK TO THAT LATER. RIGHT NOW WE'RE GONNA TAKE A QUICK BREAK. STAY TUNED FOR FOCUS ON ABILITIES. GLAD YOU'RE HERE TODAY. I'M LEX FRIEDEN, AND OUR GUEST ON FOCUS ON ABILITIES IS LINDSEY VEVA. UH, LINDSAY, WELCOME TO TODAY'S SHOW. THANK YOU SO MUCH FOR HAVING ME. SO, UH, LINDSAY, YOU, UH, UH, AS I RECALL, YOU'RE FROM OKLAHOMA? YES. I WAS BORN IN OKLAHOMA, MOVED TO WASHINGTON FOR A LITTLE BIT, BUT THEN CAME BACK TO OKLAHOMA. AND NOW YOU'RE IN HOUSTON? YES, I'M A JUNIOR AT RICE STUDYING CELL BIOLOGY AND BIOSCIENCES AND MINORING GLOBAL HEALTH. AND YEP. YOU'RE A JUNIOR AND, UH, THE BIOSCIENCES. MM-HMM . BIOSCIENCES, BUT CONCENTRATING IN CELL BIOLOGY AND GENETICS. WHAT, WHAT'S YOUR PLAN? , I HOPE TO EVENTUALLY GO TO MEDICAL SCHOOL. SO I'M ON THE PRE-MED TRACK, BUT I'M REALLY INTERESTED IN RESEARCH AS WELL. SO I'VE BEEN TRYING TO GET INTEGRATED IN THAT AS WELL. KIND OF WHAT I'VE BEEN DOING WITH YOU. RESEARCH. YEAH. SO A JUNIOR, THAT MEANS YOU'VE GOT ANOTHER YEAR AHEAD OF YOU, BUT YOU WORK DURING THE SUMMERS, RIGHT? YES, I HAVE ACTUALLY BEEN WORKING AT THE IRAU FOR THE PAST TWO SUMMERS, HAS BEEN AN INCREDIBLE EXPERIENCE. SUPER, SUPER CRUCIAL TO WHAT MY COLLEGE EXPERIENCE HAS BEEN FOR SURE. SO, UH, FOR THOSE WHO MAY NOT KNOW, ILRU IS THE INDEPENDENT LIVING RESEARCH UTILIZATION PROGRAM AT TIER MEMORIAL HERMANN. AND, UH, EVERY SUMMER WE HAVE A INTERNSHIP PROGRAM, AND LINDSAY WAS, UH, SELECTED TWO YEARS AGO, UH, TO BE, UH, AN INTERN SPONSORED BY THE CPR PROGRAM, RIGHT? MM-HMM . CPR IS THE, I BELIEVE IT'S THE CANCER PREVENTION RESEARCH INSTITUTE OF TEXAS. SPR IS A, A TEXAS ORGANIZATION THAT PUTS A LOT OF MONEY INTO CANCER PREVENTION AND RESEARCH. AND, UH, FOR YEARS IT HAS, UH, BROUGHT A LOT OF IMPORTANT PEOPLE, UH, SCHOLARS, RESEARCHERS, AND OTHERS TO OUR STATE, UH, TO HELP CURE CANCER. AND, UH, A LOT OF THE WORK IS DONE AT MD ANDERSON HOSPITAL IN HOUSTON, BUT THE SECRET PROGRAM ALSO SPONSORS A, AN INTERNSHIP PROGRAM, AND WE'VE BEEN FORTUNATE TO HAVE SOME REALLY FANTASTIC INTERNS OVER THE PAST 10 YEARS. AND, UH, LINDSEY, YOU ARE REPRESENTATIVE OF THOSE? UH, IT'S A COMPETITIVE PROGRAM. YEAH. PRETTY COMPETITIVE. IT'S BASED THROUGH UT HEALTH AND IT'S FOCUSED MAINLY ON PUBLIC HEALTH, BUT THERE'S ONLY, LAST YEAR, I THINK THERE WAS ONLY ABOUT EIGHT STUDENTS. 10, 10 OR SO STUDENTS IN MY YEAR. YEAH. SO THE, UH, A, A LIMITED NUMBER OF STUDENTS EACH YEAR. MM-HMM . ACTUALLY, UT HEALTH HAS TWO SECRET INTERNSHIP PROGRAMS, ONE AT THE SCHOOL OF PUBLIC HEALTH, WHICH YOU WERE PART OF, AND THE OTHER ONE AT OUR SCHOOL OF BIOMEDICAL INFORMATICS. MM-HMM . AND THE, UM, UH, THE MENTORS, THOSE OF US WHO ARE FACULTY AT UT HEALTH, UH, OR HAVE A ROLE IN SELECTING STUDENTS FROM THE BIOS THAT THEY PUT FORWARD AND THE PLANS. I MEAN, YOU HAD TO WRITE A, AN ESSAY AS I RECALL. YEAH. , WHAT DO YOU REMEMBER WHAT YOU WROTE ABOUT? I THINK IF I RECALL, I WROTE ABOUT HOW I WANTED TO BE A DOCTOR AND KIND OF THE PROCESS AND DISCOVERY OF THAT PATH OF, YEAH, JUST DISCOVERING. I THINK THAT WAS ONE OF THE MAIN THINGS I WROTE ABOUT PUB. 'CAUSE IT WAS ABOUT PUBLIC HEALTH, SO JUST LEARNING ABOUT SOMETHING NEW. AND I TALKED ABOUT KIND OF WHAT INSPIRED ME TO BECOME A DOCTOR AND KIND OF MY JOURNEYS THUS FAR AND WHAT I REALLY HOPE TO SEE IN THE FUTURE. SO, AND THAT'S WHERE I LEARNED YOU WERE FROM OKLAHOMA. YEAH. . YEAH. SO, UM, [00:05:01] THE EXPERIENCE AT RICE GENERALLY BEEN A GOOD EXPERIENCE FOR YOU? MM-HMM . YEAH. I REALLY, REALLY LOVE RICE. IT'S DEFINITELY, YOU KNOW, THE DIFFERENCE BETWEEN HOUSTON, OKLAHOMA, IT'S QUITE, QUITE GRAND. I LOVE THE CITY AND I LOVE RICE AS WELL. THE COMMUNITY IS INCREDIBLE. PEOPLE THERE ARE SUPER, SUPER SUPPORTIVE, AND I REALLY ENJOYED THE COURSEWORK. I FEEL LIKE I'VE BEEN ABLE TO REALLY DELVE INTO SCIENCE AND EXPLORE THE TMC, GET INVOLVED WITH IRIU. SO OVERALL IT'S BEEN A, A REALLY, REALLY GRATEFUL, I'M REALLY GRATEFUL THE CLASS SIZE AT RICE IS MANAGED TOO, RIGHT? MM-HMM . YOU DON'T HAVE ANY HUGE CLASSES? NO, NOT REALLY. I'D SAY THE LARGEST CLASS I'VE HAD IS PROBABLY ABOUT 150, 200 STUDENTS. BUT I'D SAY THE CLASSES ARE PRETTY SMALL. MOST STUDENTS HAVE A REALLY GOOD OPPORTUNITY TO MEET THE PROFESSORS AND TALK ONE-ON-ONE, UM, ESPECIALLY AT OFFICE HOURS. BUT RICE IS A PRETTY SMALL SCHOOL AND MOST OF THE STUDENTS LIVE ON CAMPUS, I'D SAY. SO HALF AND HALF YOU GET KICKED OFF ONE YEAR. SO I, THIS YEAR WAS MY YEAR TO GET KICKED OFF, BUT MOST STUDENTS WOULD PREFER TO STAY ON CAMPUS SINCE WE HAVE RESIDENTIAL COLLEGES, SO THEY CAN LIKE, STAY AT THERE WITH THEIR FRIENDS AND MOST PEOPLE WOULD PREFER TO STAY ON CAMPUS, BUT I'D SAY HALF AND HALF. SO WHEN YOU GET IN ONE OF THOSE COLLEGES, YOU GO BACK TO THE SAME ONE YEAR AFTER YEAR? MM-HMM . EVERYONE BEFORE YOU, YOU ENTER RICE, EVERYONE IS SORTED. IT'S KINDA LIKE HARRY POTTER. THERE'S I BELIEVE 11, MAYBE THERE'S 12, BUT THERE, I'M SPECIFICALLY IN WILL RICE, BUT IT'S KIND OF A HARRY POTTER HOUSE. YOU GO THERE, THEY HAVE TRADITIONS, YOU COMPETE WITH OTHER COLLEGES, SO IT'S KIND OF A VERY FUN COMPETITIVE . HOW MANY STUDENTS IN EACH COLLEGE? I'M NOT EXACTLY SURE. I THINK IT'S A HUNDRED PER CLASS, SO PROBABLY AROUND 400 PER RESIDENTIAL COLLEGE. WOW. SO THE, UH, EXPERIENCE AT RICE HAS BEEN GOOD. MM-HMM . UH, THE EXPERIENCE IN HOUSTON HAS BEEN GOOD. YES. BUT AS A STUDENT, YOU DON'T HAVE MUCH OPPORTUNITY TO GET OFF CAMPUS, DO YOU? I THINK ONLY TO EAT. I THINK I, I THINK ESPECIALLY THE PAST FEW YEARS I'VE REALLY TRIED TO VENTURE, YOU KNOW, TO BEL AIR OR EAT IN DOWNTOWN, ESPECIALLY EATING. BUT THERE'S BEEN A LOT OF THINGS TO DO IN HOUSTON, EXPLORING DOWNTOWN, TRAVELING TO AUSTIN AND DALLAS. UM, DEFINITELY MORE TO DO THAN IN OKLAHOMA FOR SURE. WHAT ABOUT SAN ANTONIO? I, I HAVE NOT HAD THE CHANCE TO GO TO SAN ANTONIO JUST YET. WOW. WELL, THAT'S A, YOU PUT THAT ON YOUR BUCKET LIST. DEFINITELY. THE, UH, THE, THE RESTAURANT SCENE. YOU GET A CHANCE TO VISIT RESTAURANTS. YES. I LOVE GOING TO RESTAURANTS, ESPECIALLY IN BELAIRE, ALL THE ASIAN FOOD THERE. AND THEN ALSO NEW HERE, SO THERE'S RICE VILLAGE AS WELL. SO ME AND MY FRIENDS WOULD TRY TO GO OUT, WELL, MAYBE IN FRESHMAN YEAR, BUT NOT AS MUCH ANYMORE. BUT DEFINITELY FRESHMAN YEAR WE TRY TO VENTURE OUT. TRY TO EXPLORE. TO EXPLORE. YEAH. WHAT ARE YOUR FAVORITE RESTAURANTS? OH, I CAN'T PICK . JUST PROBABLY ALL THE, ANY ASIAN FOOD IN BEL AIR IS, THEY'RE ALL GOOD. I'M NOT PICKY . OKAY. WELL WE'VE TRIED A LOT OF THEM TOO. MM-HMM . SO IT, I AGREE WITH YOU. THE, UM, THE SECRET PROGRAM GIVES YOU THE OPPORTUNITY TO LEARN ABOUT A LOT OF THINGS AS IN THE BASIC PROGRAM. AND THEN YOU SELECT A, UH, PROGRAM, OR THE PROGRAM SELECTS YOU, I GUESS IT'S A, IT'S, IT'S A TWO WAY STREET THERE. AND, UH, YOU GET TO FOCUS MM-HMM . FOR PART OF THE TIME WHILE YOU'RE WORKING DURING THE SUMMER. SO YOU, AS YOU DESCRIBED IT, UH, CHOSE TO WORK WITH US AT ILRU MM-HMM . AND AT THAT TIME, AS I RECALL, YOUR FOCUS WAS A LITTLE BIT DIFFERENT THAN IT IS RIGHT NOW. WHAT WAS YOUR ORIGINAL PROPOSAL TO DO? YEAH, SO I, I THINK WHAT ORIGINALLY DREW ME TO IRAU WAS BECAUSE ACTUALLY AT RISE I'M VERY INVOLVED WITH THE STUDENT WITH DISABILITIES COMMUNITY THERE AS WELL. I'M WITHIN THE STUDENT GOVERNMENT. I WAS A PART OF WHAT WE CALL A COMMISSION. SO IT'S A COMMITTEE THERE AND WE FOCUS ON PROVIDING STUDENT DISABILITY SUPPORT, LEARNING KIND OF WHAT ARE THE GAPS ON CAMPUS, DISPARITIES ON CAMPUS, AND TRYING TO KIND OF BRIDGE THAT GAP. SO THAT WAS KIND OF WHAT DREW ME TO YOUR RESEARCH ALREADY, BECAUSE IT WAS RELATED TO DISABILITY. AND I ALREADY HAD THAT KIND OF CONNECTION BACK AT RICE. AND I THINK, IF I REMEMBER, IT'S BEEN SO LONG SINCE WHEN I ENTERED, BUT WHEN I FIRST ENTERED IAUI THINK I WAS REALLY INTERESTED IN KANSAS SURVIVORSHIP, BUT MORE ON A SENSE OF JUST IN GENERAL KANSAS SURVIVORSHIP. I DON'T THINK THERE WAS ANY SPECIFIC DISABILITY IDENTITY. IT WAS SUCH A, SUCH A BROAD FIELD, BUT I DON'T, I CAN'T REALLY RECALL EXACTLY THE ENTERING PART OF IT. WELL, WE'LL GIVE YOU A MINUTE TO RECONSIDER AND THINK, BECAUSE WE'RE GONNA TAKE A BREAK, , AND WHEN WE GET BACK FROM OUR BREAK, UH, WE'LL TALK MORE WITH LINDSAY ABOUT CANCER SURVIVORSHIP, WHAT SHE'S LEARNED AND WHAT WE KNOW. UH, PLEASE STAY TUNED. WE'LL BE RIGHT BACK WITH MORE FOCUS ON ABILITIES ECO PARK, WHEN YOUR GOAL IS TO SAVE TIME AND MONEY. BOOK ONLINE WITH ECO PARK AND [00:10:01] ECO PARK TWO, NOW THAT'S A SMART GAME PLAN. TRAVEL SMARTER PARK, SMARTER ECO PARK AND ECO PARK. TWO AT IAH IN HOUSTON, WE MAKE TOMORROW TOGETHER. BUT FIRST WE MAKE DINNER TOGETHER. WE MIX INGREDIENTS AND CULTURES. WE CREATE EXCITEMENT YOU CAN TASTE AND EXPERIENCES TO SAVOR. JOIN US IN HOUSTON. LET'S MAKE TOMORROW TOGETHER. DOWNTOWN IS AN ART LOVER'S DREAM. WITH MORE THAN 65 PIECES OF PUBLIC ART, THE INFLUX OF SO MANY PEOPLE ARRIVING HERE IN HOUSTON FROM AROUND THE WORLD IS VERY IMPACTFUL ON MY PALETTE AS WELL AS MY CANVAS AS AN ARTIST. ALL THE ART THAT WAS IN HOUSTON ONLY GOT ME SERIOUS ABOUT MAKING MY OWN. WELCOME BACK. I'M LEX AND WE'RE HERE WITH LINDSAY, AND WE ARE TALKING ABOUT, UH, THE SECRET PROGRAM THAT LINDSAY WAS A PART OF. LINDSAY, YOU, UM, RECALL TWO YEARS AGO, I THINK YOU WERE FASCINATED A LITTLE BIT BY THE DIFFERENT, UH, THE DYNAMIC ISSUES THAT ARE AROUND DISABILITY. MM-HMM . AND AMONG THOSE ARE THE ISSUES OF, UH, STIGMA. AND THAT'S ONE THAT, UH, ALL OF US HAVE TO LIVE WITH AND WE HAVE TO UNDERSTAND IF WE UNDERSTAND DISABILITY. MM-HMM . SO YOUR STUDY TO DATE HAS FOCUSED ON CANCER SURVIVORS. WHY DID YOU PICK CANCER SURVIVORS? ONE REASON CLEARLY WAS BECAUSE, YEAH, , YOU HAD TO BE FOCUSED ON IT TO GET THE SECRET GRANT, RIGHT? MM-HMM . BUT WOULD YOU HAVE NATURALLY BEEN INTERESTED OTHERWISE? MM-HMM . YEAH. I THINK CANCER SURVIVORSHIP WAS SOMETHING I HAD LEARNED ABOUT THROUGH THE UT HEALTH PROGRAM, BUT ACTUALLY THE TOPIC OF CANCER SURVIVORSHIP AND DISABILITY WAS ACTUALLY MUCH MORE CLOSER TO ME THAN I HAD THOUGHT BECAUSE MY GRANDMOTHER IN THAILAND ACTUALLY IS A CANCER SURVIVOR HERSELF, AND SHE HAS, BECAUSE OF THE TREATMENT, HAS A LOT OF DISABILITIES. SHE'S UNABLE TO SWALLOW, CAN BARELY TALK. SHE'S LOST HER HEARING. SO IT HIT A LOT CLOSER TO HOME THAN I REALIZED WHEN I FIRST LEARNED ABOUT IT. IT WAS ALMOST GIVING HER WHAT HER EXPERIENCES WITH LIKE A NEW KIND OF TERM CANCER SURVIVORSHIP, WHICH I HAD NEVER LEARNED ABOUT UNTIL UT HEALTH. SO THAT WAS SOMETHING I THINK THAT THAT KIND OF OPENED MY EYES TO CANCER SURVIVORSHIP. AND I THINK IF I WOULD'VE LEARNED ABOUT IT, I WOULD'VE DEFINITELY STILL BEEN SUPER INTERESTED IN IT. WELL, THE, UH, ORIGINALLY WHEN, WHEN WE WERE LOOKING AT CANCER AS AN ISSUE, WE WERE CONCERNED ABOUT THE KIND OF REHABILITATION THAT CANCER SURVIVORS GET. AND WE DISCOVERED IN OUR RESEARCH BEFORE WE MET YOU THAT, UM, MANY YOUNG CANCER SURVIVORS DIDN'T EVEN REALIZE MM-HMM . THAT THEY WERE DISABLED IN EFFECT MM-HMM . AND, AND MANY PEOPLE WHO, UM, SURVIVED CANCER, MANY YOUNG PEOPLE TRYING TO GO BACK TO WORK, FIND SOME ISSUES RELATED TO THE CANCER MM-HMM . AND THE TREATMENT. MM-HMM . UM, SOME OF THOSE ISSUES, LINDSEY, YOU'VE IDENTIFIED THEM TOO AS WELL. WHAT, WHAT ARE THEY GENERALLY THE ISSUES RELATED TO AFTER TREATMENT? YEAH. WELL, A LOT PATIENTS WILL DEAL WITH CANCER FATIGUE FROM THE TREATMENT, OR ESPECIALLY WITH BREAST CANCER PATIENTS, THEY'LL HAVE LYMPHEDEMA, SO THEY'RE, THEY'LL HAVE LIKE PHYSICAL DISABILITIES, BUT IN GENERAL, A LOT OF PATIENTS WILL FEEL REALLY TIRED AND, BUT THEY DON'T REALIZE THAT THEY'RE ACTUALLY REALLY, THEY'RE PROTECTED UNDER THE A DA AS A PATIENT UNDERGOING, UNDERGOING TREATMENT, UM, ESPECIALLY IN REGARDS TO EMPLOYMENT AND WITH WORK. UM, SO I THINK THAT JUST KIND OF, IT'S JUST ONLY A BRIEF KIND OF ENCAPSULATION OF WHAT CANCER, YEAH. WHAT WE DISCOVERED IN OUR EARLY INTERVIEWS WERE THAT MANY PEOPLE TRIED TO GO BACK TO WORK MM-HMM . AND, UH, AFTER THEY, UM, AFTER THEY GOT ON THE JOB MM-HMM . THEY FOUND THAT THEY COULDN'T WORK AS HARD, AS LONG AS THEY HAD BEFORE THEY WERE TREATED FOR CANCER. AND THAT WAS BECAUSE OF THE EFFECT OF STAMINA MM-HMM . UH, ON THE, UH, ON THEIR PERSON. UH, AND MANY TIMES THAT WAS CAUSED BY THE CHEMO. MM-HMM . UH, SOME OF THEM HAD NEUROPATHY, UM, THEY HAD THE NEED TO TAKE BREAKS. MM. AND THESE KIND OF CONDITIONS MADE IT HARD FOR THEM TO RETAIN THEIR JOBS MM-HMM . WHEN THEIR EMPLOYER AND THEIR SUPERVISOR EXPECTED THEM MM-HMM . TO WORK AS THEY HAD BEFORE. UM, AND THEY, I THINK HAD NOT BEEN WELL COUNSELED ON WHAT THEIR RIGHTS UNDER THE A DA WERE. MOST OF THEM DIDN'T EVEN REALIZE THAT THEY WERE IN EFFECT DISABLED. UH, AND THEN WHEN THEY, YOU KNOW, WE TOOK A SUBSET AND LOOKED AT THEM, WHO ACTUALLY TALKED [00:15:01] TO THEIR SUPERVISOR AND EXPLAINED THAT THEY HAD THESE ISSUES AS A RESULT OF THEIR TREATMENT, UM, MANY OF THEM WERE ABLE TO STAY ON THE JOB BY GETTING TIME OFF DURING THE DAY TO TAKE A NAP, A BREAK OR WHATEVER. AND, UH, SO THERE'S A, A RANGE OF ISSUES THERE THAT WE DISCOVERED. BUT YOU DRILLED DOWN ONE LEVEL BELOW THAT. OH, WITH MY CURRENT STUDY? YEAH. YEAH. SO IN OUR CURRENT STUDY, WE, I ASKED THE PATIENTS OR THE SURVIVORS IF THEY IDENTIFIED WITH A PERSON WITH DISABILITY. AND I THINK ONE OF THE FINDINGS WE FOUND WAS THAT MANY PARTICIPANTS DIDN'T, OR THEY WOULD MORE DISAGREE, BUT WE SAW THAT IN THEIR A DA EDUCATION SCORE, ASKING THEM IF THEIR EMPLOYERS ARE ABLE TO DO THIS, THAT THEY ACTUALLY, A LOT OF THEM WERE UNSURE. THEY DIDN'T KNOW THAT THEIR EMPLOYERS COULDN'T DISCRIMINATE AGAINST THEM BECAUSE THEY HAD CANCER, COULD ASK THEM ABOUT THEIR CANCER TREATMENT. AND THEN WHAT WE FOUND WAS THAT A LOT OF PATIENTS WHO STATED THAT THEY WOULD BE MORE LIKELY TO IDENTIFY IF THEY DID RECEIVE MORE A D EDUCATION WITH, KIND OF GOES TO SHOW THAT LACK OF KNOWLEDGE AND KIND OF THAT LEARN MORE. EXACTLY. YEAH. WHAT WE FOUND WAS THAT THE, UH, IT, ONCE THEY FINISHED THEIR CANCER TREATMENT, ONCOLOGISTS, THE DOCTORS WHO WERE TREATING THEM WERE BASICALLY FINISHED WITH THEIR JOBS AND THE PATIENTS WERE DISCHARGED MM-HMM . AND YET THEY HAD THESE LIMITATIONS. THEY WENT BACK AND THEY DEALT WITH THEM IN THE, UH, UH, FOLLOW UP, BUT THEY, MANY OF THEM NEVER DID GET COUNSELING TO HELP THEM EXPLAIN HOW TO RELATE TO OTHER FOLKS AND INCLUDING THEIR EMPLOYERS MM-HMM . AFTER THEY WERE TREATED AND AFTER THEY WERE RECOVERED MM-HMM . UH, BUT RECOVERY IS, UH, RELATIVE, ISN'T IT? MM-HMM . YEAH, DEFINITELY. I THINK THE, AS YOU MENTIONED, THE AFTER CANCER, THE DOC, WHEN THE DOCTORS FINISH FOR THE PATIENT, THE PATIENT USUALLY GOES ON THEIR OWN, BUT IT'S UP TO THE PATIENT, I GUESS, TO KIND OF SEE WHAT RESOURCES THEY WANNA REACH OUT TO, WHETHER IT BE JOINING A SUPPORT GROUP, BUT NOT ALL PATIENTS DO THAT. SO YOU'RE KIND OF MISSING THAT KIND OF GAP OF AN OPPORTUNITY TO LEARN MORE ABOUT WHAT RESOURCES ARE ALREADY AVAILABLE TO SURVIVE. YOU MENTIONED SUPPORT GROUPS. MM-HMM . HAVE YOU LOCATED SOME, BEEN IN TOUCH WITH THEM? YEAH, SO FOR MY STUDY, A LOT OF THE PARTICIPANTS I TARGETED WORD PATIENTS AND SUPPORT GROUPS. I REACHED OUT TO A LOT OF SOCIAL WORK COUNSELORS. THERE'S SOME AT MD ANDERSON I'VE BEEN WORKING WITH TO KIND OF HEAR THEIR PERSPECTIVES, ESPECIALLY SINCE THEY'RE WORKING SO CLOSELY WITH CANCER SURVIVORS, IT'S BEEN REALLY INSIGHTFUL TO HEAR THEIR EXPERIENCES AND KIND OF WHAT THEY'VE BEEN ABLE TO SEE FROM CANCER SURVIVORS AND HOW THEY KIND OF NAVIGATE THEIR NEW LIFE AFTER GOING THROUGH CANCER. UM, BUT ESPECIALLY, BUT SO SUPPORT GROUPS HAVE BEEN A PART OF MY STUDY, BUT THEN ALSO I'D SAY A LOT OF THE CANCER ADVOCACY ORGANIZATIONS HAVE BEEN PART OF MY STUDY AS WELL. AND DO YOU, YOU FEEL LIKE PEOPLE WHO ARE PART OF THOSE GROUPS MM-HMM . ARE MAYBE BETTER SOCIALIZED OR MORE QUICKLY SOCIALIZED OR BETTER ACCEPT THE, THEIR DISABILITY STATUS? I THINK MOST PROBABLY BECAUSE, OR I WOULD SAY SO BECAUSE THE SUPPORT GROUPS THEY HAVE, BECAUSE A LOT, I THINK ONE OF THE THINGS THAT THE SOCIAL WORK COUNSELORS WE'VE TALKED ABOUT BACK AT MD ANDERSON IS THAT PATIENTS FEEL MORE COMFORTABLE WHEN THEY CAN SEE THAT THERE'S A SENSE OF COMMUNITY WHEN THEY SEE THAT OTHER PATIENTS ARE GOING THROUGH KIND OF SIMILAR EXPERIENCES. SO I THINK KIND OF HAVING THAT COMMUNITY PROVIDES PATIENTS A MORE OUTLET OF SAFETY THAT THEY CAN EXPRESS THEIR KIND OF VULNERABILITIES. AND, YOU KNOW, IF YOU KNOW ONE PATIENT MAYBE DECIDES TO IDENTIFY AS DISABLED AND HAS A SIMILAR EXPERIENCE WITH ANOTHER, MAYBE THIS OTHER PATIENT WILL FEEL MORE COMFORTABLE WITH ACCEPTING THIS TERM OF BEING DISABLED. LET'S TALK SOME MORE ABOUT THE WHERE TO GO FROM HERE. BUT FIRST WE'RE GONNA TAKE A BREAK. UH, PLEASE STAY TUNED. WE'LL BE BACK WITH FOCUS ON ABILITIES. THE KENNEDY BAKERY BUILDING IS SAID TO BE ONE OF THE OLDEST HAUNTS IN HOUSTON. MOMENTS SHARED WITH LOVED ONES ARE PRECIOUS JOY ENCHANTMENT CONNECTION. IT'S WHY WE TRAVEL AT HOUSTON AIRPORTS. WE KNOW THE MAGIC OF FLIGHT BEGINS THE MOMENT YOU SECURE YOUR PARKING SPOT AND EMBARK ON YOUR JOURNEY. THAT'S WHY WE WORK SO HARD TO BRING YOU THE MOST CONVENIENT PARKING SOLUTIONS THAT ARE THE BEST FIT FOR YOUR TRIP. IF YOU'RE TRAVELING FOR BUSINESS OR LEISURE, WHETHER YOUR VOYAGE STARTS FROM BUSH INTERCONTINENTAL OR WILLIAM P. HOBBY AIRPORT, OUR PARKING TEAM AT VALLEY PARKING ECO PARK, ECO PARK TWO OR TERMINAL PARKING IS HERE TO GIVE YOU A FIRST CLASS EXPERIENCE WITH A BIG TEXAS SMILE. WE ARE HERE FOR YOU TO ENSURE THIS MOMENT AND EVERY MOMENT IN BETWEEN WILL BE FILLED WITH GREAT MEMORIES THAT WILL LAST A LIFETIME. SO TRAVEL SMARTER, PARK SMARTER, AND GET MORE OF THE MOMENTS THAT MATTER. HOUSTON 3 1 1. NOW AVAILABLE AS A MOBILE APP, TAKE A PHOTO, [00:20:01] ENTER YOUR LOCATION REPORT AN ISSUE, THE QUICK AND EASY WAY TO REPORT NON-EMERGENCY ISSUES OR REQUEST CITY SERVICE INFORMATION. DOWNLOAD TODAY ON THE APP STORE OR GOOGLE PLAY THROUGHOUT THE COVID-19 PANDEMIC. METRO HAS BEEN THERE FOR YOU GETTING MEDICAL CENTER EMPLOYEES AND OTHER ESSENTIAL WORKERS TO THEIR JOBS DURING LOCKDOWN. WE'RE ALSO IMPROVING YOUR CUSTOMER EXPERIENCE. FOR MORE FREQUENT CLEANINGS TO SECURITY MONITORS ON VEHICLES, WE'VE LAUNCHED FREE WIFI AND INSTALLED OVER 3000 NEW ACCESSIBLE BUS STOPS ALL TO MAKE YOUR RIDE BETTER. VISIT RIDE METRO.ORG TO LEARN HOW YOU CAN DRIVE LESS AND DO MORE. ST. ARNOLD TEXAS'S OLDEST CRAFT BREWERY SHIPPED THEIR FIRST KEG OF BEER IN 1994. THIS IS FOCUSED ON ABILITIES. WE'RE HERE TODAY WITH LINDSEY, WE'RE TALKING ABOUT, UH, CANCER SURVIVORSHIP AND IN PARTICULAR THE, UH, ISSUES RELATED TO STIGMA. UH, SO LINDSEY, MANY YOUNG PEOPLE I THINK, WHO HAVE BEEN TREATED FOR CANCER AND WHO ARE NO LONGER IN TREATMENT DON'T IDENTIFY AS HAVING A DISABILITY BECAUSE THEY'RE CONCERNED ABOUT STIGMA. MM-HMM . HAVE YOU FOUND THAT'S A SIGNIFICANT ISSUE? MM-HMM . YEAH. I THINK IN OUR STUDY, ONE OF THE COMPONENTS OF MY STUDY WAS ASKING ABOUT PARTICIPANTS AND CAN SURVIVORS EXPERIENCES WITH STIGMA. AND WHAT WE FOUND IS THAT A LOT OF PARTICIPANTS DO HAVE, ARE FACING STIGMA FROM THE COMMUNITY JUST BECAUSE OF THEIR CANCER AND THEIR TREATMENT SYMPTOMS. SO WE FOUND IS SURVIVORS ARE FEELING MORE LEFT OUT, PEOPLE SEEM MORE UNCOMFORTABLE WITH THEM, AND JUST IN GENERAL, THEY FEEL THAT THEIR DAY TO DAY TAKES A LOT MORE LONGER AND THINGS AND GOT SIDE OF THINGS IN THAT SORT OF NATURE. IN, IN TERMS OF STIGMA WE'LL BE FINDING FOR SURVIVORS. SO YOU'RE A YOUNG PERSON, YOU'RE NOT RECOVERED FROM CANCER, BUT IF YOU HAD, IF YOU WERE A CANCER SURVIVOR, WOULD YOU BE PERSONALLY INCLINED TO REVEAL THAT YOU HAD A DISABILITY OR WOULD YOU BE INCLINED TO NOT REVEAL THAT BECAUSE THERE'S NO OBVIOUS MM-HMM . EVIDENCE OF THAT MM-HMM . OR WOULD IT BE SIMPLY A CASE BY CASE BASIS? MM-HMM . YEAH, THAT'S A GREAT QUESTION. I THINK FOR ME, SINCE I'VE BEEN SO INTEGRATED WITH IRE ALREADY AND KIND OF HAVE BEEN, HAVE A LOT OF EXPERIENCE WITH DISABILITY COMMUNITY, I THINK IT'D BE PROBABLY A LOT MORE EASIER FOR ME TO IDENTIFY AS DISABLED. BUT I CAN UNDERSTAND WHY FOR OTHER SURVIVORS WHO HAVE, YOU KNOW, 'CAUSE CANCER IS A WHOLE NOTHER JOURNEY, AND THEN IT'S A WHOLE NOTHER LIFE AFTERWARDS. AND FOR A LOT OF SURVIVORS ALREADY KIND OF NAVIGATING, JUST DEALING WITH CANCER AND THEN I GUESS LABELING, YOU KNOW, ANOTHER WITH DISABILITY JUST ADDS A LOT MORE STIGMA. AND A LOT OF SURVIVORS MAY BE AFRAID TO IDENTIFY AS DISABLED ON TOP OF THEIR ALREADY CANCER SURVIVOR, CANCER SURVIVOR STIGMA AS HAVING, THERE IS ALREADY A STIGMA WITH BEING A CANCER SURVIVOR AS WELL. SO I CAN SEE WHY A LOT OF PATIENTS ARE SURVIVORS ARE AFRAID MAYBE, OR MORE HESITANT TO, BUT I DEFINITELY THINK IT COULD BE ON A CASE BY CASE BASIS AS WELL. A LOT OF THE PARTICIPANTS ON OUR STUDY MENTION THAT THEY FELT THAT THEIR SYMPTOMS OR POST TREATMENT SYMPTOMS WEREN'T AS SEVERE AS COMPARED TO OTHER PEOPLE WHO THEY KNOW IN THEIR COMMUNITY. SO I GUESS IN THAT SENSE, A LOT OF SURVIVORS MAY ALSO FEEL THAT THEY DON'T HAVE, I GUESS, NECESSARILY RIGHT TO IDENTIFY BECAUSE THEIR TREATMENT SYMPTOMS AREN'T AS SEVERE AS WELL AS WE CAN CALL THAT SURVIVOR GUILT. MM-HMM . UM, AND THE, UH, I DON'T KNOW THE ISSUE OF IDENTIFICATION RELATES TO RACE FOR SOME PEOPLE IT RELATES TO, UH, SEXUAL PREFERENCE AND GENDER, IT RELATES TO, UM, UH, ANY NUMBER OF ISSUES. UH, PEOPLE WHO HAVE HIDDEN DISABILITIES ARE LESS LIKELY TO IDENTIFY AS HAVING A DISABILITY BECAUSE THEY DON'T HAVE TO MM-HMM . IT'S NOT APPARENT, IT'S NOT OBVIOUS IF IT'S OBVIOUS THAN YOU IDENTIFY CLEARLY MM-HMM . BUT IF IT'S A HIDDEN DISABILITY, THEN THE QUESTION IS WHY WOULD I DO THAT? WHY WOULD I IDENTIFY MM-HMM . ONE OF THE REASONS I THINK THAT PEOPLE MISS IS THAT THEY MISSED THE PROTECTION MM-HMM . OF THE AMERICANS WITH DISABILITIES ACT. MM-HMM . AND WHAT WE FOUND EARLY ON BEFORE YOU CAME WAS THAT MANY PEOPLE WERE LOSING THEIR JOBS MM-HMM . BECAUSE THEY WERE NOT ABLE TO PERFORM AS THEY HAD BEEN BEFORE. AND THEY DIDN'T IDENTIFY AS HAVING DISABILITY. THEY THEREFORE WERE NOT UNDER THE PROTECTION OF THE A DA OR IT WASN'T EVEN INVOKED. THEY, THEY WERE DISABLED UNDER THE LAW EVEN THOUGH THEY DIDN'T IDENTIFY, BUT MM-HMM . BUT BECAUSE THEY DIDN'T MAKE IT EVIDENT IN THE PROCESS MM-HMM . UM, MANY OF THEM LOST THEIR JOBS AND, AND SO ON, ACCOMMODATIONS WEREN'T MADE THAT NEEDED TO BE MADE THAT WOULD'VE ENABLED THEM TO CONTINUE TO WORK AND PERFORM AT A HIGH LEVEL. SO, [00:25:01] UH, WHAT WE NOW FIND IS THAT YOUNG PEOPLE, AND I THINK THIS IS NOT ONLY CANCER SURVIVORS. MM-HMM . I THINK MAY HAVE TO DO WITH OTHER, UH, CONDITIONS LIKE PEOPLE ON THE SPECTRUM. WE KNOW A LOT OF YOUNG PEOPLE WHO ARE PROBABLY DIAGNOSED ON THE SPECTRUM, EVEN WITH AUTISM, WHO DON'T NECESSARILY IDENTIFY AS HAVING A DISABILITY BECAUSE MAYBE THEY DON'T SEE IT AS A BENEFIT. MM-HMM . MAYBE THEY SEE IT AS A NEGATIVE FOR OTHER REASONS. WE DON'T KNOW THAT MM-HMM . BUT YOUR SURVEY IS HELPING US TO UNDERSTAND THAT MM-HMM . AT LEAST AS FAR AS CANCER SURVIVORSHIP IS CONCERNED. MM-HMM . AND INTERESTINGLY ENOUGH, WHEN YOU MENTIONED ABOUT HIDDEN DISABILITIES, ONE OF THE, WE ASKED THAT QUESTION AS WELL IN THE SURVEY, AND A LOT OF SURVIVORS DIDN'T, WEREN'T AWARE THAT HIDDEN DISABILITIES ARE ACTUALLY COVERED UNDER THE A DA THAT'S, THAT'S SIGNIFICANT. MM-HMM . UH, THAT'S WORTH REPEATING. SO THE, THE PEOPLE WHO ACTUALLY WERE SURVIVORS AND THEY HAD CONDITIONS THAT WOULD ENABLE THEM TO BE PROTECTED UNDER THE LAW DID NOT REALIZE THAT THEY WERE MM-HMM . YEAH. MAJORITY. THAT'S FASCINATING. SO, UM, WHERE DO WE GO FROM HERE? NOW YOU'RE DOING A SURVEY. WHAT WILL YOUR SURVEY SHOW? SO WHAT WE'VE BEEN ABLE TO CONCLUDE SO FAR IS THAT THERE IS A LACK OF DISABILITY IDENTITY WITHIN THE CANCER SURVIVORSHIP COMMUNITY. AND WHAT WE HOPE THIS SHOWS IS THAT THERE IS A LACK OF AWARENESS FOR THE A DA AND A LACK OF KNOWLEDGE OF THE A DA WITHIN THE CANCER SURVIVORSHIP SURVIVOR COMMUNITY. SO I GUESS IN TERMS OF NEXT STEPS, ONE OF THE BIG THINGS THAT WE WOULD HOPE TO FOCUS ON IS TRYING TO FIGURE OUT HOW WE CAN BETTER INCREASE KNOWLEDGE OF THE A DA WITHIN EITHER SUPPORT GROUPS OR ADVOCACY ORGANIZATIONS. AND WE'RE ALSO PARTNERING AND TRYING TO PARTNER WITH PEOPLE AT STANFORD, OR RESEARCHERS AT STANFORD AT THEIR CANCER SURVIVORSHIP PROGRAM TO TRY TO SEE IF MAYBE THERE'S A MORE SUBSTANTIAL PROGRAM WE CAN IMPLEMENT, MAYBE SOME PRACTICES WE CAN TRY TO FOLLOW AND IMPLEMENT NATIONALLY FOR CANCER SURVIVORS POST-TREATMENT. AND WE'RE CONTINUING TO WORK WITH MD ANDERSON. MM-HMM . HERE IN THE HOUSTON COMMUNITY. UH, LINDSAY, ARE THERE GROUPS IF SOMEBODY WHO WAS A SURVIVOR IS WATCHING THIS PROGRAM OR A FAMILY MEMBER MM-HMM . ARE THERE GROUPS THAT YOU'VE RUN INTO, UH, HAD EXPERIENCE WITH NOW THAT YOU WOULD REFER THEM TO? MM-HMM . YEAH. SO I THINK DEFINITELY CAN SUPPORT GROUPS EITHER AT THEIR HOSPITAL OR MAYBE THEY CAN TALK TO THEIR DOCTOR WHO THEY WERE TREATED BY. DEFINITELY THE ONCOLOGISTS AND ANY OF THE PROFESSIONALS AT THE HOSPITALS WOULD HAVE CONTACTS, PLACES TO REFER THEM TO. BUT THEN THERE'S ALSO A PLETHORA OF CANCER ADVOCACY ORGANIZATIONS FOCUSED ON SPECIFICALLY SPECIFIC CANCERS. AND THEY, AND WITHIN THOSE ORGANIZATIONS THEMSELVES, THEY HAVE A LOT OF SUPPORT GROUPS, A LOT OF OPPORTUNITIES FOR PATIENTS TO SHARE THEIR STORY. UM, WHICH IS A BIG COMMUNITY FOR SURVIVOR. SO YOU CAN PROBABLY GOOGLE CANCER. YEAH, GOOGLE FOR SURE. CANCER SUPPORT GROUPS, . YEAH. AND YOU CAN FIND 'EM ON SOCIAL MEDIA TOO. MM-HMM . YEP. SOCIAL MEDIA IS A GREAT WAY FOR SURVIVORS TO GET INVOLVED AND KIND OF LEARN MORE ABOUT THE OPPORTUNITIES THEY CAN GET INVOLVED WITH, WITH NATIONAL ORGANIZATIONS AND ALSO WITHIN, YOU KNOW, JUST SOCIAL MEDIA ITSELF. OKAY. ANY CLOSING THOUGHTS? , I GUESS WE'RE JUST REALLY EXCITED. I'M REALLY EXCITED TO SEE WHAT WE CAN DO WITH OUR RESEARCH AND KIND OF HOW WE CAN IMPROVE SUPPORT FOR CANCER SURVIVORS. I THINK THESE PAST TWO YEARS HAVE BEEN SUPER INSIGHT FOR ME IN TERMS OF WHAT, WHERE, WHAT THE GAP THERE IS IN CANCER SURVIVORSHIP, ESPECIALLY SINCE I FEEL LIKE IT'S SUCH A SMALLER, MAYBE A SMALLER FIELD IN CANCER, THE RESEARCHER CANCER CANCER RESEARCH. SO I'M, I'M REALLY EXCITED TO SEE KIND OF WHAT WE CAN DO FORWARD FOR CANCER SURVIVORS IN TERMS OF SUPPORT. OKAY. WELL, WE'LL CHECK IN WITH YOU LATER. UH, WE ASK A QUESTION AT THE BEGINNING OF THE SHOW, HOW MANY CANCER SURVIVORS ARE THERE IN THE UNITED STATES? AND THE NUMBER IS 18 MILLION. THERE'S ABOUT 18 MILLION AS IT'S NEAR 2022. 2020. BUT THERE'S PROBABLY A LOT MORE NOW. OKAY. 18 MILLION THAT WE KNOW OF. MM-HMM . CANCER SURVIVORS WITHIN THE UNITED STATES. OKAY. GOOD RESEARCHER. ALWAYS CONDITIONING YOUR ANSWER. . ALRIGHT. I WANT TO THANK ALL OF YOU FOR WATCHING FOCUS ON ABILITIES. LINDSEY, I WANNA THANK YOU FOR BEING OUR GUEST, AND, UH, HOPE YOU'LL COME BACK TO GIVE US AN UPDATE MM-HMM . UH, LATER ON, MAYBE NEXT YEAR WHEN YOU'RE A SENIOR. OKAY. . UM, YOU ALL, WE HAD A GREAT PROGRAM TODAY. WE ALWAYS DO. PLEASE WATCH HTV FOR FOCUS ON ABILITIES AND THANK YOU FOR WATCHING TODAY. THE FOLLOWING PROGRAM IS SPONSORED BY ILRU SOUTHWEST, A DA CENTER PROMOTING COMPLIANCE WITH THE AMERICANS WITH DISABILITIES ACT. * This transcript was created by voice-to-text technology. The transcript has not been edited for errors or omissions, it is for reference only and is not the official minutes of the meeting.