GLK THERE ARE MORE THAN 850,000 KENTUCKIANS WHO ARE IDENTIFIED AS HAVING A DISABILITY WHICH INTERFERES WITH ACTIVITY OF DAILY LIVING.

TODAY WE'LL MEET A BEREA COLLEGE STUDENT WHO LEARNED A FEW YEARS AGO SHE HAD A RARE BONE DISEASE AND HOW SHE IS NOW HOPING TO CHANGE THE NARRATIVE AROUND PEOPLE WITH DISABILITIES AND AFFECT CHANGE IN ADVANCING ACCESSIBILITY AND JOHNNY COLLETT FROM THE UNIVERSITY OF KENTUCKY JOINS US TO TALK ABOUT THE AGENCY'S WORK TO HELP BUILD INCLUSIVE ENVIRONMENTS AND SUPPORT FOR PEOPLE WITH DISABILITIES.

THAT'S NOW ON CONNECTIONS.

THANK YOU FOR JOINING US FOR CONNECTIONS TODAY.

I'M RENEE SHAW.

TODAY WE WANT TO BRING MORE ATTENTION TO THE NEEDS OF THOSE WITH DISABILITIES.

THE LANGUAGE WEIGH SHOULD EMBRACE, HOW TO MAKE COMMUNITIES, WORKPLACES AND RECREATIONAL SITES INCLUSIVE ASHED ACCESSIBLE TO THOSE WITH DISABILITIES THAT ARE VISIBLE AND FOR THE ONES THAT ARE NOT WE START OUR DISCUSSION WITH JOHNNY COLLETT, DEPUTY DIRECTOR OF THE HUMAN DEVELOPMENT INSTITUTE AT THE UNIVERSITY OF KENTUCKY.

IT'S GOOD TO SEE YOU.

>> GOOD TO SEE YOU, RENEE.

>> Renee: YOU HAVE HAD A LONG CAREER AND A JOURNEY AND TO GET TO THIS POINT NOW WHERE YOU ARE IN THIS SPACE, HOW REWARDING IS THAT?

AND HOW DOES IT ALL KIND OF TIE IN ALL OF YOUR PREVIOUS EXPERIENCES?

>> IT IS AND THANKS FOR THE OPPORTUNITY TO BE HERE.

AS I THINK BACK TO THE OPPORTUNITIES I'VE HAD FROM THE CLASSROOM, REALLY TEACHING CHILDREN EVERY DAY AND STUDENTS AT THE HIGH SCHOOL LEVEL AND THEN BEING ABLE TO WORK AT THE STATE LEVEL, THE DEPARTMENT OF EDUCATION AND AT A NON-PROFIT IN WASHINGTON D.C. AND THEN FINALLY AT THE U.S. DEPARTMENT OF EDUCATION, IT'S BEEN INCREDIBLE TO BE SABLE TO SEE THE WORK FROM SO MANY DIFFERENT PERSPECTIVE AS I THOUGHT ABOUT THAT WE GET TO DO REALLY GOOD WORK FROM THE DEPARTMENT OF ED AND IMPORTANT WORK AND I WAS STRUCK BY EVERY SORT OF STEP WAS A LITTLE FURTHER REMOVED FROM STUDENTS IN THE CLASSROOM AND FROM THE PROFESSIONALS.

EDUCATORS AND OTHERS AND PARENTS AND FAMILIES WHO KNOW BEST ABOUT WHAT THEIR NEEDS ARE AND WHAT THE SOLUTIONS ARE TO IMPROVE THE OUTCOMES WE ALL ENVISION FOR THEM SO I TRIED TO HOLD BOTH OF THOSE INTENTION AND WHEN I GOT TO COME BACK HOME TO KENTUCKY COME TO THE WORK FOR THE UNIVERSITY OF KENTUCKY HUMAN DEVELOPMENT INS INSTITUTE, I LEARNED MORE WHILE I WAS AWAY THAT THOSE CLOSEST TO THE STUDENTS, CLOSEST TO THE INDIVIDUAL WITH THE DISABILITY, THEY REALLY DO KNOW THEIR NEED BEST AND THEY'VE GOT THE BEST IDEAS ABOUT HOW TO IMPROVE OUTCOMES FOR THOSE FOLKS.

>> Renee: YOU REALLY HAVE A 360° VIEW OF THIS FROM HAVING BEEN IN THE CLASSROOM, TO BEING IN THE POLICY SPACES ON THE STATE AND FIBROUS DYSPLASIA LEVEL THAT IS IMPACTFUL BECAUSE YOU CAN AFFECT THE CHANGE YOU WISH YOU WOULD HAVE HAD WHILE YOU WERE IN THE CLASSROOM.

I IMAGINE IT BEING VE RAILROAD WARDING AND WITH THIS PARTICULAR NICHE, THIS POPULATION, SOMETIMES I'VE REFERRED TO PEOPLE WITH DISABILITIES AS THE FORGOTTEN MINORITY.

WOULD YOU AGREE WITH THAT CLASSIFICATION.

>> THERE ARE CERTAINLY SITUATIONS WHERE FOLKS ARE UNDERREPRESENTED.

UNFORTUNATELY I THINK MARGINALIZED BUT I THINK THAT'S WHY IT TAKES ALL OF US TO CONTINUE TELLING THE STORIES THAT ARE IMPORTANT AND TELLING THE STORIES ABOUT THE LIVES OF INDIVIDUAL, AMERICANS, KENTUCKIANS.

THAT'S ONE OF THE THINGS WE GET TO DO AT THE HUMAN DEVELOPMENT INSTITUTE AND I'M INCREDIBLY PROUD OF OUR MISSION AT THE HUMAN DEVELOPMENT INSTITUTE BECAUSE WE WORK WITH PARTNERS ACROSS KENTUCKY, ACROSS THE NATION TO ADVANCE EFFORTS AND THAT'S REALLY IMPORTANT FOR US TO THINK ABOUT.

YOU KNOW, WE ARE NOT INTERESTED IN JUST CONTINUING TO MEET AND ADMIRE THE PROBLEMS, RIGHT?

WE WANT TO FIGURE OUT TOGETHER HOW WE FIND SOME SOLUTIONS AND LET'S ADVANCE EFFORTS THAT BUILD INCLUSIVE COMMUNITIES, THAT ADDRESS THOSE TYPE OF INEQUITIES AND REALLY IMPROVE THE LIVES OF EVERYONE WHO EXPERIENCES A DISABILITY ACROSS THE LIFESPAN AND THAT LIFESPAN PART IS REALLY IMPORTANT TO US.

WE'VE GOT PROJECTS FROM PRENATAL THROUGH LIFE.

ALL THE WAY TO DEATH WITH 7 IS FUNDED PROJECTS, 300 STAFF.

I MEAN WE GET TO DO A LOT OF DIFFERENT KINDS OF WORK ACROSS THE LIFESPAN AND PARTNER WITH EVERY MAJOR ENTITY IN THE STATE THAT SERVE PEOPLE WITH DISABILITIES.

IT'S AN INCREDIBLE OPPORTUNITY AND INCREDIBLE TRUST THAT WE HOLD AND WE ARE JUST INCREDIBLY BLESSED TO BE ABLE DO THIS WORK.

>> Renee: WHEN YOU SAID ACROSS THE LIFESPAN, RIGHT, YOU ARE NOT HONING IN ON CHILDREN, YOU ARE CONSIDERING THE WHOLE PERSON'S JOURNEY AND THE INDIVIDUAL ATTENTION THEY NEED BECAUSE SOMETIMES WE THINK OF DISABILITIES THAT WE CAN SEE OR WE ASSUME THAT WE CAN SEE BUT WE ALSO KNOW THAT THAT DEFINITION HAS EXPANDED TO ENCOMPASS OTHER TYPES OF CONDITIONS, ATTENTION DEFICIT DISORDER AND ALL OF THOSE OTHER THINGS.

DO YOU THINK THAT'S HELPFUL TO MOVE THE CONVERSATION FORWARD; THAT THERE IS A RECOGNITION THAT THE WORD DISABILITIES IS BROADER THAN WE FIRST ASSUMED?

>> I THINK IT'S INCREDIBLY HELPFUL AND CONTINUES TO STRIKE ME THAT WHEN FOLKS BECOME AWARE OF THAT, IT'S ALMOST LIKE A LIGHT BULB GOES OFF.

THEY'RE LIKE OKAY.

THAT MAKES SENSE TO ME WE'VE GOT A THIRD OF KENTUCKIANS, YOU REFERENCED THE NUMBER EARLIER, A THIRD OF KENTUCKIANS WHO HAVE A DISABILITY.

THAT MEANS ONE IN THREE PEOPLE THAT WE ENCOUNTER TODAY MAY HAVE A DISABILITY AND THAT'S REALLY IMPORTANT.

YOU ARE RIGHT.

THE NOTION OF DISABILITY AND DEFINITION OF DISABILITY HAS EXPANDED, YOU KNOW, IN IT'S MOST GENERAL SENSE WITH DISABILITY, WE ARE TALKING ABOUT AN INDIVIDUAL WHO HAS A CONDITION THAT MAKES IT LET'S SAY MORE DIFFICULT FOR THEM TO DO CERTAIN ACTIVITIES OR TO ENGAGE WITH THE WORLD AROUND THEM.

THAT'S THE MOST GENERAL SENSE BUT WE'VE GOT FIBROUS DYSPLASIA LAWS AND THEN STATE LAWS THAT SORT OF TRACK THOSE THAT, THE DEFINITION OF DISABILITY SORT OF DEPENDS ON THE CONTEXT WE ARE TALKING ABOUT.

BUT WITH THE AMERICANS WITH DISABILITIES ACT, THE REHABILITATION ACT OF 1973, AND ITS AMENDMENTS YOU REFERENCED EARLIER, THE DEFINITION OF DISABILITY REALLY HAS EXPANDED QUITE A BIT AND I DO THINK THAT'S BEEN HELPFUL TO MOVE THE CONVERSATION.

>> Renee: YOU KNOW, I WAS READING SOMETHING ABOUT EUPHEMISMS AND HOW TO USE DISABILITY INCLUSIVE LANGUAGE AND THE GUIDELINES.

AND I WAS STRUCK BECAUSE ONE OF THE THINGS I HAD HEARD THAT IN CANADA ON THE RESTROOMS, YOU KNOW, IT WILL STAY PEOPLE WITH DETERMINATION AND I THOUGHT THAT-- SO HERE THE CONVERSATION HERE.

24R-9 IS A REALLY GOOD WAY OF MAKING IT INCLUSIVE.

BUT WHEN I READ THE PIECE, JUST CALL IT WHAT IT IS.

EUPHEMISMS MAKE IT SEEM LESS THAN WHAT IT IS AND THAT'S NOT ADVANCING THE CAUSE.

I'M REALLY CURIOUS ABOUT HOW H.D.I.

LOOKS AT THE LANGUAGE WE USE AND TALKING ABOUT PEOPLE WITH DISABILITIES.

HOW IMPORTANT IS IT?

>> IT'S IMPORTANT AND WE TAKE OUR CUE FROM THE INDIVIDUAL PEOPLE MAY SAY I'M A PERSON WITH A DISABILITY BUT THERE MAY BE OTHER INDIVIDUALS, AN VISM WITH AUTISM WHO MAY PREFER TO BE REFERRED TO AS AN AUTISTIC PERSON AND I THINK WHEN YOU ARE NOT SURE, YOU ASK.

>> YOU ARE AFRAID OF THAT AWKWARD MOMENT AND YOU ARE AFRAID TO AFEND BUT YOU ARE SAYING IT IS BEST TO BE STRAIGHTFORWARD AND ASK HOW THEY WANT TO BE REFERRED TO.

>> I'M NOT GOING TO MAKE A SUGGESTION OR RECOMMENDATION, BUT FOR ME, I DO TEND TO DEFAULT TO PERSON FIRST TERMINOLOGY UNTIL I LEARN THAT AN INDIVIDUAL PREFERS ME TO REFER TO THEM A DIFFERENT WAY.

AND IF I'M NOT SURE, I WILL ASK BUT I THINK THAT'S REALLY IMPORTANT BECAUSE DISABILITY IS A PART OF A PERSON'S IDENTITY.

IT'S NOT ALL OF THEIR IDENTITY BUT THAT'S WHY YOU HAVE SOON A SHIFT IN EVOLUTION OF FOLKS COMFORT AND STRIVING WITH COMFORT AND DISCOMFORT OF THIS BUT IT'S NOT A BAD THING AS LONG AS WE ARE TALKING TO EACH OTHER AND UNDERSTANDING EACH OTHER BETTER.

>> ARE WE A STATE AND A NATION RECOGNIZING THE ECONOMIC IMPACT OF THOSE WITH DISABILITIES NOT IN TERMS OF HOW MUCH THE STATE BUDGET MAY BE APPROPRIATED BUT THE VALUE THE COMMUNITY HAS IN TERMS OF THE OVERALL KENTUCKY ECONOMY.

>> THAT IS AN AREA OF GREAT INTEREST.

WE HAVE 71 FUNDED PROJECTS.

WE HAVE A LOT OF AREAS OF INTEREST IN TERMS OF EMERGING TOPIC AREAS FOR RESEARCH AND ONE OF THOSE IS DISABILITY IN HIGHER EDUCATION AND I'M COMING TO YOUR POINT ABOUT EMPLOYMENT.

12% OF STUDENTS ON A COLLEGE CAMPUS, THAT'S AN AVERAGE.

ABOUT 12% HAVE A DOCUMENTED DISABILITY WAS WE KNOW IS THAT NUMBER AND PERCENTAGE IS HIGHER.

>> Renee: THAT'S DOCUMENTED SOME STUDENTS MAY NOT DISCLOSE THEY HAVE A DISABILITY.

LET'S LOOK AT A COMPARISON AND IT'S GETTING TO EMPLOYMENT.

LET'S COMPARE STUDENTS WITH DISABILITIES WHO GRADUATE FROM COLLEGE.

GRADUATES FROM COLLEGE WITH STUDENTS WITH DISABILITIES COMPARED TO INDIVIDUALS WITH DISABILITIES WHO DIDN'T ATTEND COLLEGE.

THOSE STUDENTS WITH DISABILITIES WHO GRADUATED FROM COLLEGE WERE FOUR TO SIX TIMES MORE LIKELY TO BE EMPLOYED THAN A STUDENT WITH DISABILITY WHO DID NOT GO TO COLLEGE.

LET'S COMPARE NOW COLLEGE GRADUATES FROM A DISABILITY TO COLLEGE GRADUATES WITHOUT A DISABILITY.

COLLEGE GRADUATES WITH A DISABILITY IS SEVEN TIMES MORE LIKELY TO BE UNEMPLOYED THAN COLLEGE GRADUATES WITHOUT A DISABILITY.

SO THAT TELLS US THERE IS A DIRECT AND POSITIVE CORRELATION IMPROVED OUTCOMES IN EMPLOYMENT BUT THERE IS STILL QUITE A GAP.

WE ARE DOING A LOT IN OUR STATE AND WE SHOULD BE PROUD AS KENTUCKY FOR A LOT OF REASONS BUT I WILL POINT TO EMPLOYMENT FIRST AS A POLICY IN OUR STATE OWR LAST TWO GOVERNORS HAVE DECLARED KENTUCKY IS A EMPLOYMENT STATE.

THE FIRST PRIMARY OPTION FOR PEOPLE WITH DISABILITIES IS COMPETITIVE INTEGRATED EMPLOYMENT FOR ALL THOSE WITH DISABILITIES WHO DESIRE TO BECOME EMPLOYED.

THIS IS THE FIRST AND PRIMARY OPTION.

THAT MEANS IN KENTUCKY WHEN WE TALK ABOUT OUR WORKFORCE AND WHEN WE TALK ABOUT OUR ECONOMY, WE REALLY ARE TALKING ABOUT ALL KENTUCKY CITIZENS AND I THINK THAT'S REALLY IMPORTANT THING.

>> Renee: HIGHER EDUCATION COMPARISON IS TREMENDOUS.

WHEN YOU THINK ABOUT ACCESSIBILITY OF TOURISM SITES MAD WOULD BE THE IDEAL COMMUNITY SETTING I HOPE YOUR VIEWERS WILL LOOK EIGHT AND LEARN MORE ABOUT WHAT WE ARE DOING AT HDI BUT OUR VISION AT HDI IS THAT IT IS THE FULL PARTICIPATION AND CONTRIBUTION OF ALL PEOPLE WITH DISABILITIES IN ALL ASPECTS OF SOCIETY.

WE SET THAT OUT AS A CLEAR VISION AND WE ARE COMMITTED TO THAT VISION WORKING WITH OUR PARTNERS TO ACHIEVE IT.

WE WON'T TELL YOU WHAT THAT LOOKS LIKE IN YOUR COMMUNITY BUT IN TERMS OF IDEAL, THAT'S WHAT WE WOULD SAY, FULL PARTICIPATION AND CONTRIBUTION OF ALL PEOPLE WITH DISABILITIES IN ALL ASPECTS OF SOCIETY AND BY THE WAY, THERE IS ONLY ONE WAY TO GET TO ALL.

THERE IS ONLY ONE WAY FOR ALL TO MEAN ALL.

IT HAS TO MEAN EACH.

>> Renee: THAT'S RIGHT.

>> Renee: IT HARD TO QUANTITY BY WHAT IS LOST BY THOSE WHO ARE NOT CONTRIBUTING OR WE EXCLUDE BECAUSE OF ASSUMPTIONS ABOUT WHAT THEY CAN DO.

THAT'S HARD TO QUANTIFY ALL OF THAT LOSS POTENTIAL AND CONTRIBUTION THAT WE ARE NOT SEEING.

I MEAN WHERE COULD WE BE FURTHER DOWN THE ROAD IF THOSE WHO ARE NOT ALREADY PARTICIPATING IN THE WORKFORCE, HAD A PLACE WHERE THEY COULD.

>> I THINK YOU ARE RIGHT.

I THINK WE OUGHT TO TRY TO FIND OUT WHAT THAT COULD MEAN AND IN KENTUCKY, THAT'S ONE OF THE THINGS WE GET TO WORK ON WITH A LOT OF OUR PARTNERS AND WE WORK CLOSELY WITH THE EDUCATION WORKFORCE DEVELOPMENT CABINET, MANY OTHER PARTNERS ACROSS THE STATE.

BUT THIS MOTION OF KENTUCKY REALLY THAT WE WOULD LEAD BY EXAMPLE AND SHOW WHAT ENGRAIJED SKILLEDDED AND INCLUSIVE WORKFORCE, TRULY INCLUSIVE WORKFORCE COULD LOOK LIKE.

>> Renee: THERE HAD BEEN PREAF CONVERSATIONS ABOUT ENGAGING THOSE WITH DISABILITIES ENTER THE WORKFORCE PERHAPS AS AN EFFORT TO REDUCE THE AMOUNT OF STATE SUPPORT SERVICES THAT THEY WERE RECEIVING IN DOLLARS THEY WERE RECEIVING.

DO YOU THINK THAT IS STILL DRIVING THE CONVERSATION?

IS IT PURELY ABOUT TRYING TO OFFSET STATE DOLLARS OR IS IT ABOUT REALLY MAKING SURE THAT THIS PERSON HAS FULL PARTICIPATION FULL THEIR OWN-- FOR THEIR OWN BENEFIT.

>> I REALLY BELIEVE THAT'S THE INTENT OF FOLKS WHO ARE HAVING CONVERSATIONS AROUND THIS, ADVOCATES, PARENTS, INDIVIDUALS, POLICY MAKERS, LEGISLATORS, I THINK THAT IS THE INTENT IS THE FOCUS ON THE INDIVIDUAL.

NOW CERTAINLY THERE ARE OTHER THINGS THAT ARE A PART OF THAT CONVERSATION THAT MATTER.

AND WE ARE ENGAGED IN ANOTHER PROJECT THAT I WOULD LOOF TO SHARE A LITTLE BIT ABOUT.

>> Renee: GO AHEAD.

>> IT'S CALLED RETAIN SO I'M GOING TO SAY WHAT THAT MEANS BECAUSE IT TAKES A MINUTE.

RETAIN SO THAT IS RETAINING EMPLOYMENT AND TALENT AFTER INJURY AND ILLNESS NETWORK.

SO WE ARE PARTNERING WITH EDUCATION WORKFORCE DEVELOPMENT CABINET WHO IS THE LEAD ON THIS.

IT'S THE DEPARTMENT OF LABOR GRANT FUNDING TO KENTUCKY FOR THE NEXT FOUR YEARS AND THE UNIVERSITY OF KENTUCKY HUMAN DEVELOPMENT INSTITUTE IS THE IMPLEMENTATION LEAD ON THIS WORK SO HERE IS WHAT THIS WORK IS ABOUT.

THINK ABOUT NON-OCCUPATIONAL ILLNESSES AND INJURIES.

SO INDIVIDUALS GET INJURED OR THEY BECOME ILL OFF THE JOB.

SO THIS IS NOT A JOB RELATED THING.

THAT CAN BE DETRIMENTAL TO THAT INDIVIDUAL.

IT CAN BE DETRIMENTAL TO THEIR FAMILIES.

IT CAN BE DETRIMENTAL TO THE WILLPOWERS AND LET'S FACE IT, IT CAN BE DETRIMENTAL TO THE ECONOMY AND IT CAN LEAD TO THE PLACE WHERE INDIVIDUALS BECOME DEPENDENT ON LONG-TERM BENEFITS THAT THEY WOULD OTHERWISE MAYBE NOT BE DEPENDENT ON SO THIS IS ALL ABOUT PROVIDING CUSTOMIZED AND COORDINATED, COORDINATING MEAN AGO CROSS HEALTHCARE, ACROSS WORKFORCE, WORKING WITH EMPLOYERS AND EMPLOYEES AND THEIR HEALTHCARE PROVIDERS TO THINK ABOUT HOW DO WE MAKE A PLAN TO PROVIDE CUSTOMIZED INTERVENTION AND SUPPORTS, TIMELY SUPPORTS SO THAT YOU CAN, YOU BECOME INJURED OR ILL, BUT YOU CAN STAY AT WORK OR YOU CAN RETURN TO WORK SOONER.

SO THIS IS AN EFFORT ALL ABOUT SUPPORTING EMPLOYERS TO RETAIN VALUABLE TALENT AND, TO YOUR PRIOR POINT, TO SUPPORT EMPLOYEES TO RETAIN THEIR WORKER IDENTITY.

AND ANOTHER BENEFIT OF THAT, LIKELY, WILL BE THAT THEY WILL NOT NEED TO DEPEND ON LONG-TERM BENEFITS.

WHAT WE KNOW IS THAT IF FOLKS ARE PROVIDED CUSTOMIZED IMMEDIATE SUPPORTS THAT THEY CAN PROBABLY STAY IN THEIR JOB LONGER OR RETURN TO THEIR JOB SOONER.

>> Renee: MAKES SENSE.

LIKE WHY HAVEN'T WE BEEN DOING THAT ALL ALONG.

>> WE HAVE THE GRANT FOR THE NEXT FOUR YEARS.

KENTUCKY GOT A $$21.6 MILLION GRANT TO DO THIS WORK AND IT BUILD ON THE WORK WE HAVE BEEN DOING IN PHASE ONE WHERE WE SERVED ABOUT 200 INDIVIDUALS, TRAINED OVER 1100 FOLKS AND THIS PHASE 2 EXPANSION WILL LITERALLY BE THAT.

IT WILL EXPAND STATEWIDE AND OVER THE NEXT GOWER YEARS, WE WILL SERVE MORE THAN 3,000 INDIVIDUAL OVER THE NEXT FOUR YEARS.

>> Renee: WE'LL HAVE YOU BACK FOR AN UPDATE ON THAT PROGRESS.

THAT'S REALLY ENCOURAGING NEWS.

AND IT'S GOOD TO KNOW.

I MEAN I KNOW YOU HAVE BEEN THINKING ABOUT THESE THINGS FOR A LONG TIME BUT I THINK THE GENERAL PUBLIC SOMETIMES IS JUST A LITTLE DISCONNECTED FROM THIS CONVERSATION.

AND I THANK YOU FOR KIND OF CONNECTING THE DOTS FOR US TODAY.

AND THANK YOU FOR ALL YOUR WORK AND ALL THE SPACES YOU HAVE BEEN IN TO MOVE THIS CONVERSATION FORWARD.

>> IT'S A PLEASURE AS ALWAYS, RENEE.

THANK YOU.

>> Renee: I HOPE WILL YOU COME BACK AND GIVE US AN UPDATE.

>> THANK YOU.

>> Renee: STAY WITH US.

WE'LL TALK TO A BEREA COLLEGE STUDENT, VICTORIA BROOKS WHO WILL JOIN US TO TALK ABOUT A RARE BONE DISEASE SHE IS DIAGNOSED WITH, STRUGGLED TO GET A DIAGNOSE AND NOW SHE WANTS TO USE HER EXPERIENCE TO HELP OTHERS.

JOINING US NOW, BEREA COLLEGE STUDENT VICTORIA BROOKS WHO IS LOOKING TO ADVOCATE FOR PEOPLE WITH DISABILITIES.

SHE WAS DIAGNOSED WITH A RARE BONE DISEASE JUST A FEW YEARS AGO AND NOW SHE IS PURSUING A DUAL PROGRAM AT BEREA TO GET DEGREES IN COMPUTER SCIENCE AND MECHANICAL ENGINEERING.

PRETTY IMPRESSIVE.

GOOD TO SEE YOU.

I'M GOING TO CALL YOU TORY BECAUSE YOU GO BY TORY?

>> A LITTLE BIT.

YEAH.

>> Renee: I'LL STICK TO VICTORIA THEN.

I HAD THE PLEASURE OF MEETING YOU WHEN I DELIVERED THE CONVOCATION ADDRESS IN LATE SEPTEMBER AND JUST YOUR SPIRIT AND YOUR PRESENCE, I WAS SO IMPRESSED WITH AND YOUR ARTICULATION AND I'M HONORED THAT YOU WOULD TAKE TIME FROM YOUR BUSY DAY AT SCHOOL TO COME TALK WITH ME.

>> I'M VERY HONORED TO BE HERE SO THANK YOU.

>> Renee: I WANT TO GET RIGHT TO YOUR STORY BECAUSE, AND WE'LL SHOW PICTURES AND WE DO WANT TO GIVE YOU A HEADS UP.

SOME OF THE PICTURES YOU MAY SEE A BE A LITTLE SENSITIVE BECAUSE IT DEALS WITH A MEDICAL DIAGNOSIS AND SURGERY.

I WANT TO GIVE YOU A HEADS UP ABOUT THAT.

TELL US ABOUT THIS RARE BONE DISEASE THAT YOU HAVE AND WHEN YOU LEARNED OF IT?

>> ON OF COURSE.

I HAVE DYSPLASIA IN MY BONES IN MY FEMUR AND TIB LA, ESSENTIALLY THE DISEASE REPLACES BONE WITH FIBROUS TUMORS AND THEY'RE NOT CANCEROUS BUT THEY DO MAKE IT TO WHERE YOU ARE WALKING, STOCHING YOU PUT HAIR LINE FRACTURES INTO YOUR BONES.

I GOT DIAGNOSED IN 2017.

I HAVE BEEN FIGHTING WITH THIS PAIN EVER SINCE I WAS A KID.

MY JOURNEY TO GET DIAGNOSED WAS A VERY LONG ONE.

BUT ONCE WE FIND FINALLY GOT THE CLOSURE, IT WAS NICE TO KNOW WHAT WAS CAUSING THE PAIN.

>> Renee: YOU HAD BEEN DEALING WITH, AS LONG AS YOU EVEN UNDERSTOOD WHAT PAIN WAS.

>> YES.

>> Renee: AND YOU HAD SEEN SEVERAL SPECIALISTS AND THEY TOLD YOU WHAT?

>> MY DOCTOR JUST KEPT TELLING ME IT WAS GROWING PAINS AND THAT IT WAS NORMAL ON A LITTLE KID GROWING AND IT IS NORMAL TO SEE THIS AMOUNT OF PAIN AND MY MOM HAD PAIN GROWING UP SO IT WAS JUST KIND OF LIKE OH YOU KNOW, IT'S GROWING PAINS.

YOUR BONES ARE GROWING.

>> Renee: BUT WHEN DID IT COME TO A POINT WHERE YOU SAID, OKAY, SOMETHING MORE IS GOING ON HERE?

>> YEAH, DEFINITELY.

IN MY FRESHMAN YEAR OF HIGH SCHOOL, I WAS GETTING MORE PHYSICAL.

I JOINED JROTC WHICH REQUIRES A LOT OF PHYSICAL ACTIVITY AND I WAS RUNNING SO MUCH AND JUMPING AT NIGHT I WOULD BE SOBBING IN PAIN.

LIKE I COULDN'T FALL ASLEEP AT ALL.

AND I WOULD JUST LAY THERE CRYING SAYING SOMETHING NOTES RIGHT AND WHEN I FINALLY WENT BACK TO THE DOCTOR, HE DIAGNOSED ME WITH RUNNER'S KNEE AND SENT ME TO PHYSICAL THERAPY FOR PROBABLY A YEAR, MAYBE TWO.

UNTIL I FINALLY GOT MY DIAGNOSIS.

>> Renee: SO WE ARE SEEING ON THE SCREEN RIGHT NOW.

THIS IS AN X-RAY AND YOU CAN SEE ON THE RIGHT SIDE OF THE SCREEN, THERE ARE SCREWS THERE.

TELL US ABOUT THIS.

>> YEAH, SO TO COMBAT THE DISEASE, I WAS GETTING SO MANY FRACTURES IN MY FEMUR, THEY WERE WORRIED IT WOULD SNAP.

TO REPLACE IT, THEY ENTIRELY TOOK OUT MY ENTIRE BONE FROM MY KNEE UP SO I TO LONGER HAD A BONE FOR MY FEMUR.

I HAD A METAL ROD.

>> Renee: THIS OTHER PICTURE IS A LITTLE GRAPHIC, BUT IT SHOWS WHAT IS YOUR FEMUR BONE VERSUS NORMAL.

AND SO WE SEE THE CURVATURE.

HOW MANY FRACTURES HAD YOU ENDURED, DO YOU KNOW?

>> THEY DON'T KNOW.

I MEAN IT WENT UNDIAGNOSED FOR SO LONG THAT IT COULD HAVE BEEN MAYBE 10 TO MILLIONS.

>> Renee: OH MY GOODNESS.

>> I HAVE BEEN EXPERIENCING THIS PAIN SINCE I WAS SO YOUNG, YOU NEVER KNOW HOW MANY THERE WERE.

>> Renee: DO THESE FRACTURES HEAL?

>> YEAH, SO THEY HEAL.

THE RESEARCH IS VERY LIMITED OUT THERE ABOUT WHAT HAPPENS.

THEY BELIEVE THAT WHENEVER SOMETHING GROWS, WHENEVER YOU HAVE THESE FRACTURES, YOU ARE SUPPOSED TO GROW BACK BONE BUT THEY BELIEVE IT GROWS BACK THE FIBROUS TISSUE WHICH IS VERY BRITTLE.

>> Renee: SO WE ALSO HAVE A PHOTO OF YOU, THIS IS I GUESS SHORTLY AFTER SURGERY AND LOOK AT THIS INCISION.

THIS IS ALSO MAYBE A CAUTIONARY PHOTO FOR THOSE, IF YOU HAVE SMALL KIDDOS AT HOME.

THAT'S AN ENORMOUS INCISION.

I MEAN DO YOU REMEMBER HOW LONG THAT IS?

I'M SURE DO YOU.

>> I WANT TO SAY IT WAS MORE THAN 40 STAPLES.

I THOUGH THAT FOR SURE.

IT WAS QUITE A FEW.

THE WHOLE LENGTH OF MY FEMUR UP TO THE TOP OF MY HIP.

>> Renee: AND YOU'RE TALL.

>> VERY TALL.

>> Renee: AND WE SEE YOU HERE LIKE THIS IS POST-OP AND LOOK AT HOW YOU ARE STANDING STRAIGHT AND OF COURSE YOU HAVE A LITTLE ASSISTED DEVICE BUT IT SEEMS LIKE YOU RECUPERATED PRETTY QUICKLY.

>> I WANTED TO GO HOME THE DAY OF THE SURGERY.

THEY WANTED ME TO WAIT UNTIL THE NEXT DAY.

I MADE IT MY PRIORITY TO GET OUT OF BED AND START MOVING AND MAKE THE HEALING PROCESS AS FAST AS POSSIBLE.

>> Renee: YOU HAVE A CANE WITH YOU, BUT SOMETIMES YOU NEED IT AND SOMETIMES YOU DON'T.

>> OF COURSE.

THAT'S SOMETHING I WANT TO TALK ABOUT TODAY IS PEOPLE THAT HAVE DISABILITIES, PICTURE SOMEONE IN A WHEELCHAIR PERMANENTLY OR SOMEONE WITH A CANE OR A CRUTCH PERMANENTLY AND DISABILITY IS NOT THAT.

IT COULD BE VERY FROM NOT NEEDING AN ASSISTIVE DEVICE AT ALL TO NEEDING ONE PERMANENTLY.

I NEED IT WHENEVER MY LEG GETS TIRED, WALKING LONG DISTANCES, GOING UPSTAIRS.

IT VARIES BUT I CAN WALK AROUND MY HOUSE FOR THE MOST PART WITHOUT ANY ASSISTED DEVICE AND IN THAT CASE I'M REALLY LUCKY.

>> Renee: WHAT DOES PRESENT A CHALLENGE FOR YOU?

RUNNING OR ANYTHING HIGH IMPACT?

>> YES DEFINITELY.

RUNNING IS COMPLETELY OFF THE TABLE FOR ME JUST BECAUSE I DO HAVE THE SCREWS IN MY HIP AND STAIRS ARE REALLY HARD, WALKING UP HILLS.

WALKING REALLY LONG DISTANCES ARE HARD.

SO I USUALLY, ANY OF THAT I NEED MY CANE FOR.

>> Renee: BUT WE HAVE SOME PICTURES OF YOU IN SOME HEROIC POSITIONS HERE.

HORSE BACK RIDING.

THIS WAS HOW SOON AFTER YOUR SURGERY?

>> I WANT TO SAY MAYBE A YEAR AFTER MY SURGERY.

>> Renee: AND THEN YOU DID SOMETHING, IT'S ON MY BUCKET LIST.

I DON'T KNOW IF I'LL GET TO IT.

SKY DIESMG.

>> YES.

>> Renee: TELL US ABOUT THIS.

>> IT WAS SO FUN, EVEN BEFORE MY SURGERY I ASKED MY DOCTOR, WILL I BE ABLE TO GO SKY DIVING.

I HAVE A BUCT BUCKET LIST I WANTED TO DO AND I DIDN'T WANT THE BONE DISEASE TO BE A LIMITATION FOR IT.

BEFORE I WENT OFF-- I THINK IT WAS BEGINNING OF THIS YEAR, I WENT AHEAD AND JUST WENT THROUGH WITH IT AND I WENT SKY DIVING AND IT WAS THE MOST REALIST AND FUNNEST EXPERIENCE OF MY LIFE.

>> Renee: SO WHEN YOU LANDED DID YOU FEEL ANYTHING OTHER THAN WHAT, YOU KNOW, MOST OF US FEEL RELIEF THAT I'M STILL ALIVE FROM THIS.

>> YEAH, I WAS ACTUALLY CONCERNED ABOUT IT, THE PEOPLE THERE WERE VERY ACCOMMODATING.

THEY BASICALLY TOLD ME I HAVE TO BE ABLE TO LIFT MY LEGS OFF THE GROUND SO I DON'T HAVE THE RUNNING IMPACT.

MOST PEOPLE HAVE TO RUN BUT BECAUSE THEY KNEW I WASN'T ABLE TO DO THAT, THEY SLID ME DOWN VERY NICELY.

THE PERSON WAS VERY EXPERIENCED AND KNEW HOW TO HANDLE IT PERFECTLY.

>> Renee: I LOVE THE FACT THAT YOU ARE SHOW SHOWCASING FOR US, LET'S TAKE THE LIMIT OFF THOSE WHO HAVE DIFFERENT ABILITIES AND FOR THE DISABILITIES THAT WE MAYBE DON'T SEE, MAYBE IT'S A COGNITIVE OR A.D.H.D.

HOW DO YOU HOPE BEING THE ADVOCATE THAT YOU ARE AND I SHOULD PUT THAT AS AN IDENTIFIER BECAUSE YOU ARE THAT.

WHAT DO YOU HOPE PEOPLE YOUR AGE OR YOUNGER OR OLDER LEARN ABOUT PEOPLE WITH DISABILITIES AND EVEN YOUR STORY?

>> YEAH, I THINK I JUST WANT PEOPLE TO TAKE AWAY LISTEN TO PEOPLE WHEN THEY KNOW SOMETHING IS WRONG WITH THEIR BODY.

DON'T JUST DISMISS IT AS GROWING PAINS IN MY CASE.

LISTEN TO THEM.

THEY KNOW THEIR BODY AND OTHER PEOPLE, THEIR PARENTS KNOW THEIR BODY.

THEY KNOW WHEN SOMETHING IS WRONG WITH THEIR CHILD.

LISTEN TO THEM, UNDERSTAND MAYBE DO THAT X-RAY THAT YOU DIDN'T WANT TO DO BECAUSE YOU THOUGHT IT WAS GROWING PAINS.

LOOK NIGHT A LITTLE BIT AND FOR PEOPLE THAT DO HAVE DISABILITIES, I WANT TO SAY YOU CAN DO ANYTHING YOU PUT YOUR MIND TO.

I WENT HIKING ON A TWO-DAY BACKPACKING TRIP AND I NEVER WOULD HAVE IMAGINED THAT I WOULD HAVE BEEN ABLE TO DO THAT AND I DID IT.

IT WAS HARD.

IT WAS TOUGH.

TIMES I WANTED TO GIVE UP BUT I PERSEVERED THROUGH AND THAT'S WHAT IT'S ABOUT.

YOU JUST HAVE TO PUT YOUR HEART INTO IT AND YOU CAN ACCOMPLISH IT.

>> AND I THINK, YOU KNOW, WE TALKED ABOUT THIS, THAT ONE BIG SUBTEXT OF YOUR STORY IS THAT PATIENT ADVOCACY.

THAT YOU REALLY HAVE TO-- BECAUSE YOU KNOW YOUR OWN BODY AND YOU KNOW WHEN YOU ARE HURTING EVEN IF YOU ARE A YOUNGSTER, RIGHT?

YOU KNOW THAT AND TO GET-- TO GET PHYSICIANS TO REALLY LISTEN TO YOU AND NOT DISMISS YOU IS AN IMPORTANT MESSAGE YOU ARE SENDING.

>> SO WHAT DO YOU WANT TO BE WHEN YOU GROW UP MISS VICTORIA BROOKS?

>> I WOULD LOVE TO BE A MECHANICAL ENGINEER OR A COMPUTER SCIENCE ENGINEER.

HENCE THE DUAL DEGREES.

I AM NOT SURE.

I LOVE WORKING WITH ROBOTICS.

INHAVE BEEN DOING IT SINCE SIXTH GRADE.

A HUGE PASSION OF MINE.

>> Renee: AND YOU STILL WANT TO BE AN ADVOCATE FOR PEOPLE WITH CHALLENGES, RIGHT?

>> YES.

>> Renee: REGARDLESS WHAT FIELD YOU GO INTO.

>> EXACTLY.

>> Renee: AS WE WRAP UP, YOU KNOW, I THINK ABOUT JUST THE INSPIRATION THAT YOU ARE AND I KNOW THAT SOMETIMES YOU MOW KNOW BEING ON TELEVISION, YOU HAVE DONE REMARKABLE, RIGHT?

AND YOU ARE SO POISED AND I CAN JUST SEE YOU JUST REALLY MAKING A HUGE IMPACT NOT JUST AT BEREA OR KENTUCKY BUT THROUGHOUT.

AND I'M JUST SO VERY, VERY PROUD OF YOU.

>> THANK YOU VERY MUCH.

>> Renee: HOW DO YOUR FAMILY FEEL ABOUT HOW FAR YOU'VE COME AND WHAT IS AHEAD FOR YOU?

>> THEY'RE SO EXCITED FOR ME.

I FEEL LIKE I MIGHT HAVE AN INTERVIEW ON TV AND GET TO TALK ABOUT THIS AND REALLY HELP PEOPLE OUT THERE IN THE WORLD AND I MEEB THAT'S KIND OF THE WAY THAT I LOOK AT IT IS MY DISABILITY ISN'T THAT SOMETHING SHOULD BE FROWBD UPON.

IF ANYTHING IT'S A TRUE BLESSING TO HAVE THIS.

I GET TO BE A VOICE TO OTHER PEOPLE OUT THERE AND I REALLY GET TO SHOWCASE THAT HAVING DISABILITY ISN'T JUST ONE THING.

IT DOESN'T FIT IN A BOX.

IT COULD BE DIFFERENT FOR EVERYBODY AND I'M REALLY HAPPY TO BE PART OF THAT AND MY FAMILY IS TOO.

>> Renee: THAT'S AWESOME.

WE ARE GOING TO KEEP OUR EYES ON YOU.

I HAVE YOUR CELL PHONE NUMBER SO I CAN CALL YOU AND KEEP TABS ON YOU.

HAVE A VERY BLESSED, HEALTHY HAPPY REST OF THE SEMESTER AND YEAR TO COME AND WE'LL KEEP IN TOUCH MISS VICTORIA I.

HAS BEEN MY HONOR TO SIT WITH YOU.

>> IT HAS BEEN MY HONOR, TOO.

>> Renee: YOU CAN FOLLOW HER ON INSTAGRAM.

WHAT IS THE HANDLE?

>> VK UNDER SCORE BROOKS 578 I BELIEVE.

>> Renee: YOU CAN FIND IT IF YOU SEARCH FOR IT AND YOU CAN FIND US.

GO ON ket.org AND WATCH OUR PUBLIC AFFAIRS PROGRAMS.

YOU CAN ALSO FOLLOW ME ON TWITTER, FACEBOOK.

I DO HAVE AN INSTAGRAM ACCOUNT BUT I HARDLY CHECK IT BUT WHEREVER WE ARE, WE HOPE THAT YOU WILL BE THERE, TOO.

THANKS SO MUCH FOR WATCHING THIS EDITION OF CONNECTIONS.

I'M RENEE SHAW.