Disabled Women on the Web

Disabled Women on the Web

Legislative Briefing Papers on Disabled Young Women

LEGISLATIVE BRIEFING ON GIRLS AND YOUNG 1
WOMEN WITH DISABILITIES - COMMENTS

SACRAMENTO, CALIFORNIA, AUGUST 19, 2003


>> Brenda Premo: GOOD AFTERNOON.
CORBETT HAS GIVEN ME TEN MINUTES TO
DESCRIBE THE FACE OF HEALTH AND YOUNG GIRLS
WITH DISABILITIES.
SO THE INTERPRETERS WILL HAVE TO FORGIVE ME
IF I TALK A LITTLE FAST.

I WANT TO BEGIN WITH A STORY ABOUT ME,
BECAUSE STORIES TELL A LOT ABOUT HOW WE
THINK AS A SOCIETY.
AT THE RIPE OLD AGE OF 19 -- I WAS 19
ONCE -- I ENTERED COLLEGE.
AND THAT WAS A WHOLE NEW WORLD TO ME.
COLLEGE, WHERE I DIDN'T BELIEVE I WOULD BE
ABLE TO GO FOR A WHOLE GROUP OF REASONS, OF
EXPECTATION AND ATTITUDE ABOUT PEOPLE WITH
DISABILITIES, WOMEN AND GIRLS WITH
DISABILITIES, AND WHAT WE COULD AND
COULDN'T DO.
YOU SEE, OUR DISABILITIES WERE LOCATED IN
OUR EYES OR EARS OR LEGS, AND OUR BRAINS
WERE SUPPOSEDLY THERE, TOO.

HOWEVER, DESPITE THAT, I WENT.
AND I ALSO DISCOVERED THE WORLD OF -- THE
SOCIAL WORLD.
AND ABOUT AGE 20 I DECIDED, "I LIKE THIS,
AND I THINK I LIKE GUYS AND WELL I THINK
I'M GOING TO GO FIND OUT ABOUT BIRTH
CONTROL."
MEDI-CAL -- DOCTORS STILL TOOK MEDI-CAL
BACK THEN, AND SO I WENT TO THE CLINIC.
THERE WAS EVEN -- AND THE SCHOOLS HAD
REALLY GOOD CLINICS, AND I WAS REFERRED TO
A DOCTOR WHO HAD A LARGE CLINIC.
AND THE DOCTOR HIMSELF WAS FAIRLY GOOD.

AND I WAS SITTING THERE WAITING TO BE
INTERVIEWED, AND TWO THINGS HAPPENED THAT
WERE ASTOUNDING TO ME AT THAT TIME, AND
STILL HAPPEN TO YOUNG GIRLS, GIRLS WHO HAVE
TALKED TO ME.
FIRST, THE DOCTOR IMMEDIATELY TALKED TO ME
ABOUT WHETHER OR NOT I WISHED TO BE
STERILIZED.
THE SECOND THING THAT HAPPENED WAS THAT TWO
NURSES, ONE OF THEM WAS TALKING TO THE
OTHER AND SAID, "HE DOESN'T NEED TO DO
THAT, ALL OF THEM ARE STERILE ANYWAY."
I IMMEDIATELY WENT TO MY GIRLFRIEND TO TELL
HER SHE WAS STERILE.
SHE HAD THREE KIDS.

THERE WAS AN IGNORANCE OF MY POTENTIAL TO
PARENT, IF I WISHED TO, AND THE GENETICS
AND JUDGMENT ABOUT LACK OF EDUCATION, ABOUT
WHETHER I COULD OR COULDN'T, NOT BASED ON
EVIDENCE, AWARENESS, BUT BASED ON WHAT
PEOPLE THOUGHT WERE TRUE.

ABOUT THREE YEARS LATER I DECIDED THAT I
DIDN'T WANT TO HAVE CHILDREN, BUT IT WASN'T
BECAUSE OF MY GENETICS.
IT WAS BECAUSE I WISHED TO WORK.
I WISHED TO WORK A WHOLE LOT, AND THAT'S
WHAT I AM, A WORKAHOLIC. AND I BELIEVE
THAT PARENTS, THIS WAS A VALUE TO ME,
NEEDED TO DO THAT, THAT NEEDED TO BE THE
MAJOR PART OF WHAT THEY DID.

AND SO I DECIDED TO GO IN, AND BIRTH
CONTROL PILLS ARE NOT MY FAVORITE WAY TO DO
THINGS.
IT HAD INTERESTING THING TO DO TO ME.
I CHOSE TO HAVE MY TUBES CAUTERIZED.
THERE WAS A LAW THAT I WAS INFORMED A
CERTAIN PERIOD OF TIME AHEAD AND WAIT 24
HOURS.

I WAS NEVER INFORMED OF THAT.
THE DOCTOR ASSUMED, BECAUSE I WAS DISABLED
AND HAD A GENETIC CONDITION, THAT ALTHOUGH
I WAS A YOUNG GIRL, THAT I SHOULD NOT BE
GIVEN THE OPTIONS OR TOLD ABOUT THOSE,
BECAUSE I SHOULD HAVE THIS DONE NOW.
I WANTED IT, AND I HAD CHOSEN IT, AND I HAD
GONE THROUGH A VERY DELIBERATIVE PROCESS
MYSELF.

UNFORTUNATELY, MANY YOUNG GIRLS DIDN'T GO
THROUGH THAT PROCESS AND STILL DON'T.
EVEN THOUGH THERE ARE LAWS AGAINST
STERILIZATION AGAINST PEOPLE'S WILL, IT
HAPPENS.
IT HAPPENS BECAUSE WE DON'T REMEMBER ABOUT
TELLING PEOPLE ABOUT THEIR RIGHTS.

SOME YEARS LATER I BEGAN TO HAVE SOME
ISSUES.
THEY WERE ISSUES ABOUT PAIN AND THINGS THAT
WOMEN GO THROUGH WITH CRAMPS, BUT THEY GOT
WORSE AND WORSE, AND I WENT IN AND WAS
HAVING IT DEALT WITH.
AND ALL THE MATERIALS THAT WERE PROVIDED TO
ME WERE UNREADABLE BY ME.

NO ONE PROVIDED A DESCRIPTION OF WHAT WAS
GOING TO HAPPEN TO ME.
THIS WAS BOTH A MAMMOGRAM AND OB-GYN
EXPERIENCE.
MY MOTHER HAD HAD BREAST CANCER, AND IT WAS
A DECISION THAT I SHOULD HAVE A PRELIMINARY
CHECK.
NOBODY TOLD ME ANYTHING, NO ONE PROVIDED ME
ANYTHING, AND EVERYTHING IN PRINT SIZE WAS
SO SMALL, I COULDN'T READ IT, AND NO ONE
WAS GOING TO DESCRIBE IT FOR ME.
I WENT TO THREE DOCTORS BEFORE ONE WOULD
PROVIDE ME WITH BASIC INFORMATION.

TODAY, IN THE 21st CENTURY, I HAVE YOUNG 4
GIRLS COMING TO THE CENTER OR THEIR
FAMILIES TALKING TO US ABOUT HOW TO GET
THIS INFORMATION AND HOW TO MAKE THE
ENVIRONMENT BOTH MORE SENSITIVE AND MORE
ACCESSIBLE.
IN THE TIME THAT I'VE WORKED IN THE AREA OF
HEALTH, I'VE DISCOVERED A NUMBER OF THINGS
THAT CREATE BARRIERS FOR ALL PEOPLE, ALL
WOMEN WITH DISABILITIES, BUT CREATE
ADDITIONAL BARRIERS TO THE YOUNG GIRLS.

THERE ARE THE PHYSICAL BARRIERS, THE
BARRIERS WHERE YOU CAN'T GET ON THE TABLE,
SO WE'RE GOING TO SKIP ALL THAT CARE.
WE SKIP PREVENTATIVE CARE, AGE APPROPRIATE
CARE, GENDER APPROPRIATE CARE, BECAUSE THE
TABLE DOESN'T GO UP AND DOWN, AND WE JUST
DON'T HAVE STAFF, AND WE'RE SUPPOSED TO SEE
PEOPLE IN 15-MINUTE INCREMENTS.

PEOPLE WITH COGNITIVE -- YOUNG GIRLS WITH
COGNITIVE DISABILITIES AND MENTAL
DISABILITIES ARE NOT PROVIDED THE RIGHT
KIND OF PREPARATION.
MANY TIMES THE DOCTORS REFUSE CARE, OR THEY
USE EXCESSIVE MEDICATION, NOT BECAUSE THE
WOMAN NEEDS IT OR THE GIRL NEEDS IT, BUT
BECAUSE OF TIME.
BECAUSE OF TIME.

WE WORKED ON TWO PROJECTS, ONE I'LL SAY,
CALIFORNIA ENDOWMENT, AND THE OTHER ONE
WITH THE CALIFORNIA HEALTH CARE FOUNDATION
AND A THIRD FOUNDATION WHERE WE ACTUALLY
HAVE CREATED MATERIALS TO HELP YOUNG GIRLS
UNDERSTAND.
AND THESE WERE DESIGNED FOR YOUNG GIRLS
WITH COGNITIVE DISABILITIES TO UNDERSTAND
PRE, WHAT'S GOING TO HAPPEN, HOW IT'S GOING
TO HAPPEN, AND TO TRAIN PEERS, PEOPLE WITH
COGNITIVE DISABILITIES TO WORK WITH OTHER
GIRLS WITH COGNITIVE DISABILITIES ABOUT
WHAT'S HAPPENING, WHY IT'S HAPPENING, TO GO
WITH THEM AND CREATE MATERIALS, AND WE'VE
TESTED THEM.

AND WHERE WE'VE TESTED THEM, THE GIRLS AND
THEIR MOTHERS REPORTED IT WAS SOMETHING
THAT WAS NEEDFUL.
THERE NEEDED TO BE PREPARATION.
WE'VE DONE A SURVEY OF HEALTH
PROFESSIONALS, DOCTORS, AND WE'VE ASKED
THEM WHAT THE BARRIERS FOR THEM ARE.
THE BARRIERS ARE TIME, ACCESSIBLE
EQUIPMENT, AND EDUCATION.

80% OF THE DOCTORS WE SURVEYED SAID THEY
HAD NO INFORMATION ABOUT DISABILITY IN
MEDICAL SCHOOL.
NOW, I FIGURE THAT YOU GO TO A DOCTOR
BECAUSE YOU'RE SICK, AND YOU MAY HAVE A
DISABILITY, WHETHER IT'S TEMPORARY OR
PERMANENT.
THEY REPORT THEY'RE TAUGHT TO FIX PEOPLE,
AND IF THEY DON'T FIX THEM, THEY'RE
DEPRESSED, AND THEY DON'T WANT TO DEAL WITH
THE REALITY OF THE PROBLEM.

THERE NEEDS TO BE PEDIATRIC AS WELL AS
OB-GYN TRAINING AND FOR OB-GYN DOCS AND
FAMILY PRACTITIONERS ON HOW TO DEAL WITH
YOUNG GIRLS WITH DISABILITIES.
WE LEARN THAT THE WOMEN WITH DISABILITIES
ARE ABUSED FOUR TIMES MORE, SEXUALLY AND
PHYSICALLY, THAN WOMEN WHO ARE NOT
DISABLED.
AND OF THAT, MOST OR MANY ARE WOMEN WITH
COGNITIVE OR MENTAL DISABILITIES.
THEY DIDN'T HAVE ONE BEFORE, THEY'LL HAVE
ONE AFTER.

DOCTORS DON'T ASK THE SCREENING QUESTIONS
FOR ABUSE, BECAUSE THEY ASSUME THAT YOU'RE
NOT GOING TO HAVE SEXUAL ACTIVITY IF YOU'RE
DISABLED, OR YOU'RE NOT ABUSED.
THAT PART OF THE INTERVIEW DOESN'T OCCUR.
WE'VE LEARNED THAT YOUNG GIRLS ARE NOT
AWARE OF HOW TO ADVOCATE FOR THEMSELVES,
HOW TO ASK THOSE QUESTIONS, OR HOW TO BE
MADE AWARE OF THEIR DISABILITIES.

WE'VE MADE RECOMMENDATIONS ABOUT ACCESS,
LOWER TABLES -- MEN MADE THOSE THINGS, I
KNOW IT, I'M TELLING YOU -- AND ALSO TO
LOOK AT THINGS LIKE DOCTOR EDUCATION AND
PATIENT EDUCATION.
WHAT IS MY RESPONSIBILITY AS AN ADULT,
YOUNG ADULT OR AN AGING ADULT, TO TAKE CARE
OF THE ISSUES TO HELP EDUCATE MY PHYSICIAN?
HOW TO KNOW WHAT I NEED TO KNOW, AND WHAT
ARE THE QUESTIONS I NEED TO ASK, AND TO
HELP DEVELOP PROTOCOLS WHICH WILL ASSIST
THE TECHNICIAN, THE PA, THE
NURSE-PRACTITIONER TO GO THROUGH THE
PROCESS AND TO ALLOW FOR TIME, IN SOME WAYS
A MATTER OF POLICY TO PROVIDE INCENTIVES,
HABITATION INCENTIVES FOR DOCTORS, NURSES
TO TAKE THE TIME NECESSARY TO DO WHAT WE
NEED TO DO.
THOSE ARE THINGS WE'VE LEARNED SO FAR.

WE WANT TO CONGRATULATE YOU FOR PUTTING
THIS THING TOGETHER, BECAUSE WE BELIEVE
THERE ARE A WHOLE RANGE OF ISSUES.
A LOT OF THEM HAVE TO DO WITH EMPOWERMENT,
BELIEVING I CAN COULD WHAT I NEED TO DO,
BELIEVING I CAN ADVOCATE, AND PEOPLE WANT
TO HEAR WHAT I HAVE TO SAY AS A YOUNG GIRL
OR WOMAN, BECAUSE THAT'S WHEN I'M GOING TO
BEGIN TO TAKE MATTERS INTO MY OWN HAND.

THE LAST ISSUE I WANT TO SAY BEFORE I MOVE
ON IS, WE ALSO DISCOVERED ONE OTHER THING
PEOPLE BELIEVE, THAT DISABILITY IS HAND AND
HAND WITH ILLNESS.
WE KNOW THAT'S NOT TRUE.
THEY DON'T KNOW IT'S NOT TRUE, SO THEY
DON'T WORK ON WELLNESS.
AND FOR YOUNG GIRLS, THEY BEGIN TO THINK
ABOUT OUR EXERCISE, OUR DIET AND HOW WE CAN
REMAIN WELL.
THE NARROWER MARGIN OF HEALTH WE HAVE AS A
PERSON OR GIRL WITH DISABILITIES CAN BE
WIDENED, AND THE QUALITY OF WHAT WE HAVE
CAN BE EXTENDED.

BUT THOSE WHO WE WORK WITH TO PROVIDE OUR
CARE NEED TO THINK ABOUT DISABILITY NOT IN
TERMS OF ILLNESS.
WE NEED TO THINK ABOUT DISABILITY AND
HEALTH AND WELLNESS.
AND IF THAT HAPPENS, A LOT OF THE OTHER
ISSUES THAT WE SEE, SECONDARY CONDITIONS,
EARLY ONSET OF AGING PROCESSES COULD BE
REDUCED SIGNIFICANTLY.

CONGRATULATIONS FOR DOING THIS, AND THANK
YOU.
[ APPLAUSE ]
>> Leslie Wolfe: CORBETT.
>> Corbett O'Toole: MY NAME IS CORBETT
O'TOOLE, AND MY DAUGHTER MEECHA IS IN THE
PICTURE AT THE TABLE.
SHE'S OUT OF TOWN RIGHT NOW, SO SHE SENT
HER PICTURE INSTEAD.
ALL OF THE PHOTOGRAPHS YOU SEE IN THE
HALLWAY ARE FROM OUR FAMILY, FROM
ADVENTURES OUR FAMILY HAVE HAD TOGETHER
WITH MANY OTHER WOMEN WITH DISABILITIES.

MY DAUGHTER IS THE BEST KID IN THE WORLD.
YEAH, I KNOW YOU EXPECT TO HEAR THAT FROM
ANY MOTHER, BUT HONESTLY, AND EVEN
OBJECTIVELY I HAVE THE BEST CHILD I COULD
EVER HAVE.
SHE'S SMART, SO SHE KEEPS ME WAY ON MY
TOES.
SHE'S FUNNY, SO I'M ALWAYS LAUGHING.
SHE HAS A WONDERFUL HEART, AND SHE LOVES
ADVENTURES.
SO WE ALWAYS HAVE A GREAT TIME TOGETHER, AS
YOU WILL SEE FROM THE PICTURES.
AND SHE HAS A DISABILITY, JUST LIKE HALF A
MILLION GIRLS IN CALIFORNIA.

WHAT THIS MEANS FOR US IS VERY DIFFERENT
DEPENDING ON THE CONTEXT.
I'M A SINGLE MOTHER, AND MY DAUGHTER IS MY
ONLY CHILD.
SO WHATEVER NEEDS TO BE DONE HAS TO BE DONE
BY THE TWO OF US.
AT HOME, WE HAVE A LOT OF CONTROL OVER OUR
ENVIRONMENT.
SO THE HOUSE IS ACCESSIBLE FOR MY DAUGHTER
AND ME, AND WHEN SOMETHING DOESN'T WORK, WE
MAKE IT WORK.

NOW, WE DON'T HAVE A LOT OF MONEY -- I ONLY
LIVE ON A DISABILITY INCOME -- BUT WE'RE
CREATIVE. 5
SO WHATEVER COMES OUR WAY, WHETHER IT'S
MAKING THE BATHROOM ACCESSIBLE OR DEALING
WITH GETTING BOOKS ON TAPE, WE FIND A WAY
TO MAKE IT WORK WITH A LOT OF BRAIN POWER
AND VERY LITTLE MONEY.

BECAUSE OUR FUNDAMENTAL ASSUMPTION IS THAT
WE ARE BOTH WOMEN WHO DESERVE TO HAVE
RESPECT IN OUR LIVES, BOTH FROM THE PEOPLE
IN OUR LIVES AND FROM THE ENVIRONMENTS THAT
WE'RE IN.
OUR HOME ALLOWS US TO FUNCTION
INDEPENDENTLY, WITH NO OUTSIDE ASSISTANCE,
EVEN THOUGH WE BOTH USE WHEELCHAIRS, AND
EVEN THOUGH MY DAUGHTER HAS CEREBRAL PALSY.

UNFORTUNATELY, THE PEOPLE IN ENVIRONMENTS
OUTSIDE OUR HOME ARE OFTEN NOT RESPECTFUL
TO US AS WOMEN, AS DISABLED WOMEN, OR IN MY
DAUGHTER'S CASE, AS A YOUNG DISABLED WOMAN
OF COLOR.
I WANT TO GIVE YOU A GLIMPSE OF SOME OF THE
WAYS THAT THE CURRENT SYSTEM OF HEALTH CARE
IN CALIFORNIA IS OFTEN DISRESPECTFUL TO MY
DAUGHTER AND MANY OTHER GIRLS, AND WHAT CAN
BE PUT INTO PLACE TO MAKE IT BETTER FOR ALL
GIRLS WITH DISABILITIES.

MY DAUGHTER MEECHA IS CURRENTLY TEN YEARS
OLD.
SHE WORKED WITH ME ON THE TALKING PART OF
THE PAPER TO IDENTIFY SOME BARRIERS THAT
SHE WANTED ME TO SHARE WITH YOU.
THE TWO SHE WANTS ME TO FOCUS ON TODAY IS
UNINFORMED HEALTH CARE PROVIDERS AND THE
LACK OF ACCESSIBLE EQUIPMENT.

IN MY DAUGHTER'S TEN YEARS SHE HAS HAD OVER
150 MEDICAL APPOINTMENTS.
AND EACH TIME SHE HAS SEEN A NEW DOCTOR,
REGARDLESS OF THE SPECIALTY OF THE DOCTOR,
WE ARE ASKED, "WHAT'S WRONG WITH HER LEGS?"
EXCEPT AFTER THEY'VE HAD SENSITIVITY
TRAINING, THEY SAY "HI, HOW YOU DOING?
WHAT'S WRONG WITH HER LEGS?"
AFTER SEVERAL APPOINTMENTS, THAT MAKES HER
UNCOMFORTABLE.

SHE CHOOSES TO LIVE WITH THE PAIN FOR A DAY
OR TWO UNTIL SHE CAN SEE HER REGULAR
DOCTOR, WHO WE'VE ALREADY GONE THROUGH THIS
PROCESS WITH, AND NOT SEE A NEW DOCTOR.
WHEN SHE'S FORCED TO VISIT A NEW DOCTOR,
BEFORE WE GO IN SHE WILL OFTEN ASK ME TO
TALK TO THE DOCTOR ON HER BEHALF.
MANY DOCTORS MISINTERPRET THIS AS A LACK OF
COGNITIVE FUNCTION ON HER PART, SO THEY
INCREASE THEIR INSENSITIVE BEHAVIOR.
IT NEVER SEEMS TO OCCUR TO THEM THAT THEY
HAVE OFFENDED HER AND THAT SHE, IN FACT, IS
REACTING APPROPRIATELY TO BEING TREATED
DISRESPECTFULLY.

HER CHILDHOOD MEDICAL EXPERIENCES HAVE BEEN
OVERWHELMINGLY, ALTHOUGH OFTEN
UNINTENTIONALLY, DISRESPECTFUL.
GIVEN A CHOICE, SHE WOULD NEVER GO TO THE
DOCTOR.
SHE DOES NOT SEE THEM AS HAVING ANY
RESOURCES THAT SHE NEEDS.

AS HER MOTHER, I'M VERY WORRIED ABOUT THIS
INABILITY TO SEE MY DAUGHTER AS A GIRL WITH
HEALTH NEEDS BEYOND HER PHYSICAL
DISABILITY.
I KNOW THAT MY DAUGHTER IS IN A HIGH-RISK
GROUP.
GIRLS WITH DISABILITIES HAVE LESS ACCESS TO
BASIC HEALTH CARE INFORMATION, INCLUDING
SEX EDUCATION INFORMATION, ARE AT A HIGHER
RISK FOR SUBSTANCE ABUSE, FOR EATING
DISORDERS, FOR TEEN PREGNANCY, AND FOR
PHYSICAL AND SEXUAL ABUSE.

I WANT MY DAUGHTER TO HAVE ACCESS TO THE
INFORMATION THAT MANY HEALTH ADVOCATES SUCH
AS THE PEOPLE IN THIS ROOM HAVE WORKED SO
HARD TO GET THE DOCTORS TO LEARN: HOW TO
SCREEN FOR HIGH-RISK BEHAVIORS, HOW TO GIVE
GIRLS MEDICAL INFORMATION THAT HELPS THEM
BECOME WOMEN WHO PRACTICE WELLNESS, HOW TO
IDENTIFY ABUSE.
BUT IF DOCTORS ONLY SEE MY DAUGHTER AS A,
QUOTE-UNQUOTE, BROKEN BODY, AND SHE ONLY
SEES THEM AS UNINFORMED AND DISRESPECTFUL,
THEN THEY WILL NEVER CREATE THE
PATIENT-PROVIDER RELATIONSHIP THAT'S NEEDED
TO TRANSMIT IMPORTANT HEALTH INFORMATION.

MEECHA WOULD LIKE ALL MEDICAL PROVIDERS TO
BE REQUIRED TO, ONE, GET TRAINING IN
LEARNING THAT GIRLS WITH DISABILITIES ARE
GIRLS FIRST AND HAVE THE HEALTH NEEDS OF
OTHER GIRLS; TWO, THAT ASKING WHAT IS WRONG
WITH HER LEGS IS OFFENSIVE.
SHE SUGGESTS ASKING A QUESTION SUCH AS:
"WHY ARE YOU HERE TODAY?"
AND THREE, THAT THERE BE A SYSTEM OF
EVALUATING PROVIDERS FROM A PERSPECTIVE OF
GIRLS WITH DISABILITIES TO BE SURE THEY'RE
TREATING GIRLS RIGHT.

THE OTHER PROBLEMS ARE PHYSICAL ENVIRONMENT
IN HEALTH CARE.
YES, SHE CAN GET INTO DOORS, ALTHOUGH NOT
BY HERSELF, AND YES, SHE CAN USE THE
TOILET.
BUT SHE HAS NEVER HAD AN ACCESSIBLE
EXAMINATION TABLE, AND IN MY 52 YEARS,
NEITHER HAVE I.
SHE HAS NEVER HAD AN ACCESSIBLE EXAMINATION
OR MRI OR CAT SCAN OR WEIGHED ON AN
ACCESSIBLE WEIGHT SCALE OR HAD EDUCATIONAL
MATERIALS PROVIDED TO HER IN AUDIOTAPE OR
LARGE PRINT.

WHEN SHE NEEDS TO GET ONTO A TABLE, SHE
OFTEN FEELS LIKE AN UNWELCOME SACK,
SOMETHING THAT NEEDS TO BE MOVED, BUT NO
ONE WANTS TO MOVE IT.
HEALTH CARE PROVIDERS USUALLY EXPECT
MOTHERS TO DO THIS, RESULTING ON LOTS OF
BACK INJURIES FOR MOTHERS OF DISABLED
CHILDREN.

AT HOME AND AT SCHOOL MY DAUGHTER CAN GET
IN AND OUT OF HER WHEELCHAIR ALONE, SO SHE
WONDERS WHY IN MEDICAL SETTINGS, WHERE THEY
EXPECT GIRLS TO BE DISABLED, IS IT ALWAYS
INACCESSIBLE?
AND AS SHE GETS TALLER, SHE WONDERS WHAT
WILL HAPPEN WHEN IT'S TOO HARD FOR PEOPLE
TO LIFT HER ONTO THE TABLE?

MY DAUGHTER MEECHA IS JUST ONE OF HALF A
MILLION DISABLED GIRLS IN CALIFORNIA WHO
ARE ASKING THESE KINDS OF QUESTIONS.
IT IS IMPORTANT FOR THEM AND FOR US, THAT
WE MAKE HEALTH CARE WORK FOR ALL GIRLS AND
WOMEN BECAUSE, AS WE GET OLDER, WE'RE GOING
TO NEED EXACTLY WHAT THESE GIRLS ARE ASKING
FOR.
THANK YOU VERY MUCH.
[ APPLAUSE ]

>> Alice Wong: MY COLLEAGUE SARAH TOM AND
I ARE BOTH YOUNG WOMEN WITH DISABILITIES IN
OUR 20s.
HAVING GRADUATED FROM HIGH SCHOOL AND
COLLEGE, AND NOW IN THE WORKFORCE AND
GRADUATE SCHOOL, WE THOUGHT THAT IT WAS
IMPORTANT TO BE INVOLVED THIS LEGISLATIVE
BRIEFING TO GIVE VOICE TO THE EXPERIENCES
OF YOUNG WOMEN WITH DISABILITIES WHO ARE IN
THE PROCESS OF TRANSITIONING FROM TEENAGERS
TO YOUNG ADULT WOMEN.
WE BELIEVE THAT YOUNG WOMEN WITH
DISABILITIES MUST HAVE ACCESS TO THE TOOLS
THAT ALLOW THEM TO PURSUE THEIR
PARTICIPATION IN SOCIETY.

TODAY I WILL FOCUS ON THREE ISSUES HERE,
YOUNG WOMEN WITH DISABILITIES AS THEY
TRANSITION TO ADULTHOOD:
ONE, ACCESS TO HEALTH CARE; TWO, GETTING
AND KEEPING INSURANCE WHILE EMPLOYED; AND
THREE, WELL-BEING.

FOR THE FIRST ISSUE, ACCESS TO HEALTH CARE,
BARRIERS TO ACCESS CAN BE BOTH PHYSICAL AND
ATTITUDINAL, AS BOTH BRENDA AND ARE CORBETT
MENTIONED.
HERE IS AN EXAMPLE OF HOW HEALTH CARE
PROVIDERS LACK THE AWARENESS OF THE NEEDS
OF YOUNG WOMEN WITH DISABILITIES IN
UNIVERSITY SETTINGS.

A YOUNG WOMAN WITH A DISABILITY WHO IS A
STUDENT AT THE UNIVERSITY OF CALIFORNIA
GOES TO THE CAMPUS HEALTH CARE CENTER AND 6
NEEDS TO GET A URINE TEST.
SHE USES A WHEELCHAIR AND NEEDS ASSISTANCE
TRANSFERRING TO THE TOILET.
THE STAFF EXPLAINS TO THE STUDENT THEY ARE
SIMPLY NOT ALLOWED TO ASSIST IN TRANSFERS.
THE STAFF REFUSES TO ASSIST HER.
SO SHE MUST GO BACK TO HER DORM, WAIT FOR A
PERSONAL ATTENDANT TO COME THAT EVENING,
AND THEN GO BACK TO THE HEALTH CARE CENTER
TO DROP OFF THE SAMPLE.

PERHAPS THE CENTER WAS AFRAID SHE WOULD SUE
THEM IF THEY DROPPED HER.
PERHAPS IT WAS NOT WORTH TEN MINUTES OF
THEIR TIME TO ASSIST HER.
REGARDLESS, IN THIS CASE, THE SYSTEM IS
CHOOSING TO DENY PHYSICAL ACCESS TO TIMELY
CARE BECAUSE OF AN ATTITUDINAL BARRIER.

ANOTHER IMPORTANT ISSUE REGARDING HEALTH
CARE IS SEXUALITY.
STUDIES OF YOUNG DISABLED WOMEN REPORT THAT
HEALTH CARE PRACTITIONERS FREQUENTLY TREAT
THEM AS ASEXUAL.
ALTHOUGH THEY HAVE HIGHER RISK FOR STDS AND
UNPLANNED PREGNANCIES, THEY ARE RARELY
PROVIDED HEALTH CARE THAT INQUIRES ABOUT
THEIR SEXUAL LIVES OR HIGH-RISK BEHAVIORS.

YOUNG WOMEN WITH DISABILITIES WANT TO BE
VIEWED AS WOMEN WITH QUESTIONS AND NEEDS
REGARDING THEIR SEXUAL HEALTH.
RATHER THAN ASSUMING HEALTH NEEDS ARE ONLY
RELATED TO DISABILITY, HEALTH CARE
PROVIDERS SHOULD BE MINDFUL THAT THEY HAVE
THE SAME CONCERNS AS OTHER YOUNG WOMEN
REGARDING PREGNANCY, SEX AND BIRTH CONTROL.
ON THE OTHER HAND, YOUNG WOMEN WITH
DISABILITIES ALSO NEED SPECIFIC INFORMATION
ABOUT HOW THEIR DISABILITIES INTERACT WITH
THEIR SEXUAL AND REPRODUCTIVE HEALTH.

THE SECOND ISSUE IS GETTING AND KEEPING
INSURANCE WHILE EMPLOYED.
MANY YOUNG WOMEN WITH DISABILITIES START
NEW SYSTEMS OF HEALTH CARE IN THEIR
TRANSITION TO ADULTHOOD.
FOR SOME YOUNG WOMEN THIS MEANS ENROLLING
IN MEDI-CAL OR OTHER PUBLICLY FUNDED
PROGRAMS.
FOR OTHERS, IT MEANS NAVIGATING EMPLOYER
INSURANCE PROGRAMS.
UNFORTUNATELY, YOUNG WOMEN WITH
DISABILITIES HAVE FEW RESOURCES FOR
BECOMING EDUCATED ABOUT THESE IMPORTANT
SERVICES.

YOUNG WOMEN WITH DISABILITIES WHO ARE ON
MEDI-CAL AND RECEIVE ATTENDANT CARE
SERVICES THROUGH IN-HOME SUPPORTIVE
SERVICES FACE ADDITIONAL CONSTRAINTS WHEN
PURSUING EMPLOYMENT.
IN ORDER TO REMAIN ELIGIBLE FOR SUCH
PROGRAMS, YOUNG WOMEN WITH DISABILITIES ARE
LIMITED IN THEIR ASSET ACCUMULATION WHERE
THEY'RE IN JEOPARDY OF LOSING THEIR
BENEFITS.
FOR EXAMPLE, MEDI-CAL HAS A NEW BUY-IN
PROGRAM THAT RAISES THE INCOME CEILING BUT
THE ASSET LIMIT REMAINS FIXED AT $2,000.

SO LOSING HEALTH CARE IS AN ENORMOUS
CONCERN FOR YOUNG WOMEN WITH DISABILITIES.
IN SOME CASES, THIS MEANS STUDENTS WILL
PASS UP INTERNSHIPS OR COLLEGE GRADUATES
WILL PASS UP HIGH-PAYING JOBS BECAUSE THEY
FEAR THAT EARNING TOO MUCH WILL DISQUALIFY
THEM FROM PUBLICLY FUNDED COVERAGE.
THEY MAY NOT QUALIFY FOR EMPLOYER-SPONSORED
HEALTH INSURANCE, OR THE JOB MAY NOT OFFER
IT.
AND EVEN IF THEY QUALIFY FOR PRIVATE
INSURANCE, THEY MAY NOT BE ABLE TO AFFORD
DISABILITY PROVISIONS BASED ON THE STARTING
SALARY OR LOW WAGE.

PUBLIC POLICIES MUST RENEW CONSTRAINTS THAT
EXIST ON THEIR INCOME AND ASSETS, THEREBY
ALLOWING YOUNG WOMEN WITH DISABILITIES TO
KEEP THEIR NECESSARY INSURANCE AND
DISABILITY BENEFITS.

THE THIRD ISSUE IS REGARDING WELL-BEING.
WELL-BEING ENTAILS MANY ASPECTS IN A
WOMEN'S LIFE, PARTICULARLY WHEN SHE HAS A
DISABILITY.
A SENSE OF WELL-BEING INCLUDES BEING --
FEELING SAFE AND SECURE IN PUBLIC AND
PRIVATE SPACES, AND IF A YOUNG WOMAN IS
ROBBED BY A PERSONAL ATTENDANT AND LEFT
WITHOUT MONEY AND IDENTIFICATION, SHE'S
ROBBED IN MORE WAYS THAN ONE.
HER ABILITY TO TRUST OTHER ATTENDANTS AND
HAVE CONFIDENCE IN HERSELF AS AN EMPLOYER
IS ENDANGERED.

WITHOUT SUPPORT AND ENCOURAGEMENT, SHE MAY
WANT TO MOVE HOME AND NEVER HIRE ANOTHER
ATTENDANT BELIEVING THAT SHE WILL BE
VICTIMIZED AGAIN.
ON THE OTHER HAND, WITH A NETWORK OF
FRIENDS AND HEALTH CARE PROFESSIONALS, SHE
CAN USE HER ROBBERY AS A LEARNING
EXPERIENCE, AND CONTINUE TO LIVE
INDEPENDENTLY.

VIOLENCE AND ABUSE TOWARDS YOUNG WOMEN WITH
DISABILITIES ARE REALITIES THAT OFTEN
REMAIN UNREPORTED AND UNNOTICED.
YOUNG WOMEN NEED MORE GUIDANCE IN
RECOGNIZING THE SERIOUSNESS OF SUCH CRIMES
AND HOW TO PROTECT THEMSELVES.

MOREOVER, AUTHORITIES WHO DEAL WITH
SURVIVORS OF VIOLENCE AND ABUSE NEED TO
KNOW HOW TO BEST SERVE YOUNG WOMEN WITH
DISABILITIES.
WITH THESE SUPPORTS AND ADVOCATES IN THE
COMMUNITY, YOUNG WOMEN WITH DISABILITIES
CAN HAVE MORE CONFIDENCE IN THEIR ABILITY
TO LIVE A HEALTHY AND ACTIVE LIFE.

IN CONCLUSION, POLICY MAKERS AND HEALTH
CARE PROVIDERS SHOULD BE AWARE OF THE
SALIENCY OF PEOPLE WITH DISABILITIES,
NEW SYSTEMS OF HEALTH CARE, BALANCING THEIR
ELIGIBILITY FOR SERVICES AND LIFE
ASPIRATIONS.
MUCH OF THIS FEAR AND UNCERTAINTY COULD BE
ABATED BY MORE SPECIFIC AND YOUTH-TARGETED
INFORMATION.

WE MAKE THE FOLLOWING THREE
RECOMMENDATIONS: ONE, TRAINING FOR HEALTH
CARE WORKERS IN TREATING YOUNG DISABLED
WOMEN WITH RESPECT TO BOTH THEIR ABILITY TO
BE IN CHARGE OF THEIR HEALTH CARE AS WELL
AS THEIR KNOWLEDGE OF THEIR OWN BODY;
NUMBER 2, EXCEPTIONS WITHIN MEDI-CAL AND
INCOME ASSET LIMITATIONS TO ALLOW MORE
DISABLED WOMEN TO WORK AND MAINTAIN HEALTH
INSURANCE AS NEEDED AND NEEDED DISABILITY
SERVICES; AND 3, SENSITIVITY TRAINING FOR
MEDICAL AND LAW ENFORCEMENT PERSONNEL WHEN
DEALING WITH ABUSE CLAIMS FOR YOUNGER WOMEN
WITH DISABILITIES.

THANKS FOR YOUR TIME.
[ APPLAUSE ]

>> Kathy Martinez: GOOD MORNING.
AM I ON NOW?
THANK YOU.
I WOULD JUST LIKE TO TAKE THE OPPORTUNITY
TO THANK CORBETT AND LESLIE FOR ALLOWING ME
TO PRESENT.
I WANT TO THANK THE MEN IN THE AUDIENCE
THAT ARE HERE.
I DON'T ASSUME THERE'S TOO MANY, BUT FOR
THOSE WHO ARE HERE, I APPRECIATE THE FACT
THAT YOU ARE HERE TO LEARN AND BRING
INFORMATION TO YOUR MOTHERS, SISTERS,
DAUGHTERS.
IT'S AN IMPORTANT THING.

THERE ARE A NUMBER OF VERY SPECIFIC ISSUES
ABOUT HEALTH CARE AS IT RELATES TO GIRLS OF
DIVERSE CULTURAL BACKGROUNDS AND GIRLS OF
COLOR WITH DISABILITIES THAT I WOULD LIKE
TO ADDRESS.
AS A RULE, DISABLED GIRLS OF COLOR, AND I
WILL USE THAT TERM JUST FOR BREVITY'S SAKE,
ARE OFTEN LAST IN THEIR FAMILIES TO RECEIVE
HEALTH CARE.

FOR A NUMBER OF REASONS, INCLUDING THE
TYPICALLY NONDISABLED MALES IN FAMILIES
LIKE THE CULTURE WHERE I COME FROM, THE
LATINO CULTURE, NONDISABLED MALES RECEIVE
MEDICAL CARE FIRST. 7
AND BECAUSE OF DELAYED TREATMENT, DISABLED
GIRLS ARE OFTEN SICKER WHEN THE FAMILY
FINALLY SEEKS CARE FOR THEM.

I HAVE AN EXAMPLE.
A WOMAN NAMED ELANA CAME TO OUR OFFICE A
FEW WEEKS AGO, AND SHE HAD A PHYSICAL
DISABILITY.
SHE WAS NOT SEEN AS SEXUAL BY HER FAMILY
AND COMMUNITY.
ONE DAY THE FAMILY NOTICED THAT SOMETHING
WAS WRONG AND TOOK HER TO THE DOCTOR.
THE DOCTOR ALSO SAW ELANA AS ASEXUAL.
SO SHE WAS NOT SCREENED FOR SEXUALLY
TRANSMITTED DISEASES.
IT TURNS OUT THAT ELANA HAD BEEN RAPED BY A
FAMILY MEMBER.
BY THE TIME HER GONORRHEA WAS DIAGNOSED, IT
WAS VERY ADVANCED.
ATTITUDES OF THE FAMILY AND DOCTORS
RESULTED IN SERIOUS PHYSICAL TRAUMA TO THAT
YOUNG WOMAN.

I HAVE A PERSONAL EXAMPLE THAT KIND OF
SHOWS THE OTHER PART OF THE COIN.
I WAS BORN BLIND.
I FORGOT, CORBETT ASKED ME TO WAVE TO ALL
THE BLIND PEOPLE IN THE AUDIENCE.
I RECEIVED MEDICAL CARE AT PROBABLY ONE OF
THE BEST KNOWN EYE CLINICS IN CALIFORNIA,
THE JULES STEIN EYE CLINIC, A TEACHING
HOSPITAL.
THE DOCTORS KEPT TELLING MY PARENTS THAT IF
THEY KEPT BRINGING ME AND MY SISTER, BY THE
WAY, IF THEY KEPT BRINGING US BACK, WE
WOULD GAIN OUR VISION.

SO WE WOULD HAVE THESE HORRIBLE VISITS
WHERE WE WOULD BOTH BE EXAMINED BY TEAMS OF
DOCTORS AND MEDICAL STUDENTS.
I JUST REMEMBER SMELLING THEIR BAD BREATH.
IT WAS JUST THIS CHILDHOOD MEMORY THAT I
WILL NEVER FORGET.
THESE PROCEDURES WERE EXTREMELY
UNCOMFORTABLE AND INVASIVE.
WE WERE BASICALLY SAT ON AN EXAMINING TABLE
WITH OUR HEADS TIPPED BACK SO THAT FOLKS,
MOSTLY GUYS, COULD LOOK INTO OUR EYES.
OF COURSE, MY SIGHT NEVER CHANGED.

THE POINT IS, FIRST OF ALL, THAT MY PARENTS
WERE ASKED TO SIGN FORMS.
EACH TIME THEY BROUGHT US, THEY OBVIOUSLY
HAD VERY LIMITED ENGLISH, AND COULD NOT
UNDERSTAND THE FORMS.
THE CARROT OF HOPE WAS CONSTANTLY BEING
DANGLED IN FRONT OF THEM, AND IT WAS CLEAR
BY AGE 6 THAT NEITHER MY SISTER'S NOR MY
VISION WOULD EVER CHANGE.
MY PARENTS WERE VERY DISAPPOINTED.
THEY REALLY BELIEVED THAT THINGS WOULD
CHANGE.
WE WERE CERTAINLY PROBABLY SOME OF THE
LONGEST UTILIZED GUINEA PIGS AT THAT EYE
CLINIC.

A SIGNIFICANT NUMBER OF DISABLED GIRLS IN
CALIFORNIA LIVE IN FAMILIES WHERE ENGLISH
IS NOT -- SORRY -- LESLIE THREW SALT ON MY
BRAILLE -- SUGAR -- CHANGE THE
CONFIGURATION OF THE DOTS.
>> Leslie Wolfe: FOR HER SWEETNESS.
>> Kathy Martinez: GIRLS IN CALIFORNIA
LIVE IN FAMILIES WHERE ENGLISH IS NOT THE
PRIMARY LANGUAGE, AND PARENTS MAY OR MAY
NOT BE FLUENT IN ENGLISH.
PARENTS ARE OFTEN IN THE POSITION OF HAVING
TO MAKE NUMEROUS MEDICAL APPOINTMENTS AND
DEAL WITH MEDICAL PROFESSIONALS WHO ONLY
SPEAK ENGLISH.

UNFORTUNATELY FOR THESE GIRLS WITH
DISABILITIES FROM DIVERSE CULTURAL
BACKGROUNDS AND THEIR FAMILIES, NEARLY ALL
DISABILITY-SPECIFIC SERVICES SUCH AS
AUDIOLOGY OR PHYSICAL THERAPY ARE PROVIDED
BY ENGLISH-ONLY SPEAKERS.

I GUESS I WANT TO FINISH BY SAYING THAT
BRINGING UP AN ISSUE THAT BRENDA BROUGHT
UP, AND IT'S ABOUT ACCESS TO INFORMATION.
BECAUSE THERE IS NOT AN ACCESSIBLE WAY
PROVIDED BY MOST MEDICAL FACILITIES TO
COMPLETE FORMS, OFTEN FOLKS LIKE MYSELF AND
PEOPLE WHO CAN'T HANDLE PRINT MATERIAL ARE
RELYING ON THE RECEPTIONIST TO HELP US
COMPLETE A FORM WHO OFTEN, BECAUSE OF HER
JOB, INSISTS ON COMPLETING THE PAPERWORK IN
THE PATIENT WAITING ROOM, EVEN THOUGH THIS
INFORMATION IS PRIVATE, SUCH AS BILLING
INFORMATION OR SOCIAL SECURITY NUMBERS.
I HAVE WONDERED MANY, MANY, MANY TIMES,
WHEN MY PERSONAL INFORMATION IS BEING
BROADCAST THROUGHOUT THE LOBBY, JUST WHO IS
LISTENING.

TO ECHO BRENDA, CORBETT, AND ALICE AND
SARAH, I THINK I WOULD LIKE TO SAY THAT FOR
WOMEN OF COLOR AND GIRLS OF COLOR, THE
CONCEPT OF EDUCATION, TRAINING,
INFORMATION, OF PROVISION FOR BOTH DOCTORS
AND OF PATIENTS, IS CRITICAL.
AND THAT GIRLS FROM DIVERSE BACKGROUNDS,
CULTURAL BACKGROUNDS, DESERVE RESPECTFUL
AND QUALITY TREATMENT AT ALL LEVELS OF THE
HEALTH CARE SYSTEM.
THANK YOU.
[ APPLAUSE ]

>> Leslie Wolfe: I THINK WE HAVE SOME
TIME FOR QUESTIONS OR COMMENTS, AND I HAVE
SUGGESTED TO HARALYN, AS OUR GURU, THAT SHE
SHOULD BE THE FIRST PERSON TO COME FORWARD
AND MAKE A COMMENT, ASK A QUESTION.
YOU WANT TO COME UP HERE?
I KNOW FOR A LOT OF YOUNG WOMEN AROUND THE
COUNTRY, AND IT HAS BEEN PROVED HERE TO ME
TODAY, HARALYN ROUSSEAU IS A DISTANT MENTOR
AND GURU, AM I RIGHT?

>> Kathy Martinez: SHE'S AFRAID SHE'S
GOING TO GET A NOSE BLEED.

>> I REALLY JUST WANTED TO THANK -- I
REALLY WANTED TO THANK THE SPEAKERS BECAUSE
OF REALLY COMPELLING REMARKS.
I THINK YOU REALLY HAVE BROUGHT SOME
HEIGHTENED AWARENESS TO A GROUP OF YOUNG
WOMEN WHO ARE REALLY SO INVISIBLE IN OUR
CULTURAL -- OUR SOCIETY, AND PART OF WHAT I
HEAR YOU SAYING IS THAT WHEN IT COMES TO
YOUNG PEOPLE WITH DISABILITIES, GENDER AND
NOT JUST GENDER, RACE AND ETHNICITY AND
CLASS, AND THAT ALL THE FACTORS THAT WE
KNOW INFLUENCE THE LIVES OF NOT DISABLED
YOUNG PEOPLE, ALSO INFLUENCE DISABLED YOUNG
PEOPLE.
BUT WHAT I ALSO HEARD YOU SAYING IS THAT
GIRLS AND YOUNG WOMEN BRING TO THEIR
COMPLEX LIVES, IN THE MANY AREAS THEY FACE,
A LOT OF STRENGTHS AND A LOT OF ASSETS.
YOU HAVE A REAL RESILIENCE, I COULD HEAR
THAT FROM ALICE AND SARAH AND MEECHA WHO
DIRECTED YOUR PRESENTATION.
AND I SORT OF THINK THAT PART OF OUR JOB AS
ADVOCATES AND AS POLICY MAKERS IS TO REALLY
STRENGTHEN THAT RESILIENCE THAT THESE YOUNG
WOMEN HAVE, AND TO REDUCE THE BARRIERS THAT
THEY FACE, SO THAT THEY CAN REALLY TAKE
THEIR RIGHTFUL PLACE IN SOCIETY.
SO I THANK YOU ALL FOR YOUR WONDERFUL
THOUGHTS.
[ APPLAUSE ]

>> Leslie Wolfe: ARE THERE ANY OTHER
QUESTIONS OR COMMENTS?
IDEAS?
YES.
DO WE HAVE AN ARRANGEMENT FOR A MICROPHONE?

>> Corbett O'Toole: PEOPLE ARE GOING TO
HAVE TO COME TO THE MIKE.

>> Leslie Wolfe: I THINK WE'RE SUPPOSED
TO COME TO THE MICROPHONE.
ARE ANY OF THEM MOVABLE?

>> Brenda Premo: WHILE PEOPLE ARE COMING
FORWARD, ONE OF THE THINGS THAT WE'VE BEEN
WORKING ON WITH THE CALIFORNIA MEDI-CAL
POLICY INSTITUTE IS REPORT THAT LOOKS AT
BARRIERS TO HEALTH CARE FOR PEOPLE WITH
DISABILITIES.
A NUMBER OF FOCUS GROUPS AND A NUMBER OF
THEM WERE YOUNG FOLKS AND YOUNG GIRLS.
WE HAD A SPANISH SPEAKING GROUP THAT WAS
JUST OUTSTANDING.
AND WHAT WE DISCOVERED WAS THAT MANY PEOPLE
ON MEDI-CAL, ON STRAIGHT MEDI-CAL IN
PARTICULAR, IN ADDITION TO ALL THE BARRIERS 8
THAT WE'VE TALKED ABOUT, COULDN'T FIND,
ESPECIALLY IF THEY HAD CEREBRAL PALSY OR
OTHER ORTHO DISABILITIES, COULD NOT FIND A
PHYSICIAN WHO WAS NOT A PEDIATRIC OR
GERONTOLOGIST.
SO YOU WENT FROM PEDIATRICS, WHEN YOU WERE
25, 30 YEARS OLD YOU WERE STILL WITH YOUR
PEDIATRIC DOCTOR UNTIL YOU REACH A CERTAIN
AGE WHERE THEY SAY, "I CAN'T HANDLE YOU
ANYMORE, YOU'RE GOING TO GERIATRICS."
ONE OF MY FRIENDS HAS MOVED TO THE
GERIATRIC SIDE OF THE SCALE FROM THE
PEDIATRIC.

BUT ONE OF THE ISSUES WE LEARNED IS BECAUSE
OF THAT THE NORMAL KINDS OF
GENDER-APPROPRIATE CARE, INCLUDING THINGS
LIKE COLDS AND FLU, COULD NOT BE CARED FOR
BECAUSE THE PEDIATRICIAN WAS NOT EQUIPPED
TO DEAL WITH THOSE ISSUES.
AND WE FIND THAT TO BE TRUE IN ORPHAN
DISABILITIES SMALL IN NUMBER, AND ONLY THE
SPECIALIST OF THAT PARTICULAR DISABILITY
TYPE COULD DEAL WITH IT AND KNEW NOTHING
ABOUT GENERAL CARE.
THAT WAS ANOTHER BARRIER THAT WE DISCOVERED
AS WE WORKED WITH THE FOCUS GROUPS ON
PROVIDING CARE.

>> Leslie Wolfe: THANK YOU VERY MUCH.

>> MY NAME IS RHONDA KING, AND I'M HERE AS
A MEMBER OF THE CALIFORNIA COUNCIL TO THE
BLIND.
I ALSO WANT TO SAY HELLO TO BRENDA PREMO
WHO WAS OFTEN A GUEST SPEAKER AT OUR
CONVENTIONS ON BEHALF OF THE DEPARTMENT OF
REHABILITATION.
ANYWAY, I KNOW AS A BLIND PERSON AND AS A
DISABLED WOMAN, THAT EDUCATION OF DOCTORS
AND OTHER OFFICIALS IS HIGHLY IMPORTANT,
LAW OFFICIALS AND ALL THOSE, AND ACCESSIBLE
FORMAT IS SOMETHING THAT WE'VE BEEN, YOU
KNOW, ADVOCATING FOR MANY YEARS.
AND IT LOOKS LIKE IT'S GOING TO BE A
CONTINUOUS FIGHT FOR ALL OF US.

I DID WANT TO SAY THAT A FEW YEARS AGO I
WORKED WITH A GROUP CALLED SPAT, AND IT WAS
SPECIAL POPULATIONS ACTION TEAM.
AND IT WAS MADE UP OF FOUR DISABLED GROUPS,
INCLUDING THE BLIND, VISUALLY IMPAIRED, THE
HARD OF HEARING AND THE DEAF, AND THE
DEVELOPMENTALLY DISABLED, AS WELL AS THE
HEMOPHILIACS.
IT WAS AN ACTION TEAM TO FIND OUT ABOUT
INFORMATION AND ANYTHING ELSE AND EDUCATING
PUBLIC HEALTH OFFICIALS AND EVERYTHING, ON
HOW TO DEAL WITH THESE DISABLED GROUPS AS
FAR AS THE ISSUE OF AIDS, HIV AND AIDS.
AND THEY HAD GIVEN A GRANT FOR QUITE A FEW
YEARS, FOR ABOUT THREE OR FOUR YEARS, TO
CONTINUE WORKING ON THIS.
AND TWO YEARS AGO, THEY STOPPED THE GRANT.

AND THEY ACTUALLY -- THEY DIDN'T COMPLETELY
STOP IT WITH SOME OF THE DISABLED GROUPS,
BUT THEY CUT US BACK, THE BLIND GROUP, CUT
US BACK 50% AND ONLY CUT THE OTHER ONES
BACK 10% ON OUR GRANT.
AND IT'S REALLY HARD FOR THOSE WHO ARE
BLIND.
IT'S MUCH HARDER, BECAUSE LIKE THE YOUNG
WOMAN HERE SAYS ABOUT THE ACCESSIBILITY TO
PRIVACY, OKAY.
WHEN YOU'RE BLIND, YOU DO NOT HAVE ANY
PRIVACY WHEN IT COMES TO FILLING OUT ANY
INFORMATION OR ANYTHING ELSE.
AND OF COURSE, WHEN YOU'RE DEAF, YOU HAVE
TO USE AN INTERPRETER, SO AGAIN, YOU HAVE
NO PRIVACY.
AND THE DEVELOPMENTALLY DISABLED WHO OFTEN,
YOU KNOW, ARE SEXUALLY ABUSED, YOU KNOW,
HAVE NO ACCESS TO THE INFORMATION, EITHER,
AND THE EDUCATION.

BUT I WANT TO COMMEND ALL OF YOU.
I HAD NOT HEARD OF ANY OF THESE GROUPS
UNTIL RECENTLY WHEN THEY ASKED ME TO
REPRESENT OUR GROUP HERE TODAY AT THIS
HEARING, AT THIS SEMINAR.
AND I'M VERY PROUD TO BE HERE.
AND I'M VERY, VERY GLAD THAT THERE ARE
PEOPLE OUT HERE WORKING ON BEHALF OF
DISABLED WOMEN.
THANK YOU.
[ APPLAUSE ]

>> Leslie Wolfe: ANOTHER QUESTION OR
COMMENT, 1 AND 2.

>> I'M PRETTY TALL, SO --

>> Leslie Wolfe: YOU CAN SIT AND BE
COMFORTABLE.

>> TAKE OFF YOUR SHOES.

>> MY NAME IS ALICE WASHINGTON, AND I WORK
FOR THE CALIFORNIA INSTITUTE FOR MENTAL
HEALTH, AND I'M PROVIDING COMMENT ON THEIR
BEHALF.
I WAS RECENTLY APPOINTED TO THEIR COUNCIL,
THE CALIFORNIA WOMEN'S MENTAL HEALTH POLICY
COUNCIL.
I WANTED TO BRING THE ISSUE OF STIGMA AND
DISCRIMINATION AROUND THE ILLNESS.
I HAVE PTSD AS A RESULT OF INCEST, I THINK
WHAT YOU BROUGHT FORTH IN TERMS OF HEALTH
CARE LOOKING AT WOMEN AS BROKEN BODIES IS
VERY IMPORTANT.
IT -- I THINK WOMEN WHO ARE IN MENTAL
HEALTH CARE OR RECEIVING MENTAL HEALTH CARE
ARE OFTEN FORGOTTEN BUT ARE REALLY
STERILIZED IN TERMS OF REALLY FEELING
HONORED TO BE A WOMAN AND ALSO NEEDING TO
BE PARENTS AND WANTING TO BE PARENTS, BUT
REALLY KIND OF SHUFFLED IN THE BACKGROUND
OF THOSE KIND OF ROLES IN LIFE.

I THINK IT'S SO IMPORTANT OF WHAT YOU TALK
ABOUT IN TERMS OF RESPECT FOR WHAT WOMEN DO
FOR OUR WORLD, I MEAN, WE ACTUALLY SORT OF
BRING LIFE TO THE WORLD.
AND IF WE ARE DISRESPECTED IN TERMS OF
HEALTH CARE, THEN IT REALLY SORT OF
ENDANGERS OR WHOLE NATION, PLAN, ET CETERA
IN TERMS OF CONTINUING THE RACE.
I THINK IT'S VERY IMPORTANT THAT WHEN WE DO
BECOME EMPLOYED, WE ARE, OUR EMPLOYERS, ARE
MADE AWARE OF TRAUMA AND GENDER ISSUES.

IT IS VERY IMPORTANT THAT, AS WE WORK IN
THE WORKFORCE, WE DON'T BECOME VICTIMS OF
SEXUAL HARASSMENT, WE DON'T BECOME TOKENS
OF LESS ME DRESS YOUR MEETING UP WITH
BEAUTY AND STUFF, AND REALLY BECOME THE
BROKEN EMPLOYEE OF THE ORGANIZATION.
SO I JUST WANTED TO BRING THAT TO THE
FOREFRONT.
I THINK STIGMA AND DISCRIMINATION AGAINST
ALL WOMEN WITH DISABILITIES REALLY OPENS
THE DOOR THAT PERPETUATES EMOTIONAL ABUSE,
PHYSICAL ABUSE, SEXUAL ABUSE, ET CETERA.
SO WE NEED TO WORK ON THE STIGMA AND
DISCRIMINATION AND CLOSE THAT DOOR SO THAT
WE CAN BECOME HONORED FEMALES IN OUR
SOCIETY.
THANK YOU.
[ APPLAUSE ]

>> MY NAME IS DAMARISE PEREZ, AND I'M A
DAUGHTER OF TWO BLIND PARENTS WHO WERE TOLD
NEVER TO HAVE CHILDREN.
I'M A MOTHER OF A SON WITH RETINITIS
PIGMENTOSA WHO WAS DIAGNOSED AT THE AGE OF
SIX, AND I WAS TOLD AT THAT TIME THAT I
SHOULD CONSIDER A TUBAL LIGATION.

I CURRENTLY WORK FOR THE INDEPENDENT LIVING
CENTER OF RIVERSIDE.
AND I THOUGHT IT WAS IMPORTANT ENOUGH -- I
WAS INVITED TO COME HERE TODAY -- I
RECENTLY WROTE A LITTLE GRANT AND WAS
FUNDED BY THE DEPARTMENT OF REHABILITATION.
THE GRANT, AND THIS PROGRAM IS CURRENTLY
UNDER WAY IN RIVERSIDE COUNTY, IS A
SELF-ADVOCACY PROCESS THAT ADDRESSES
SEXUALITY, REPRODUCTIVE CARE, AND OPTIONS
TO PROMOTE WELLNESS AMONG WOMEN WITH
DISABILITIES.
MY CONCENTRATION WAS ON LATINO WOMEN IN THE
INDIO AND PARIS VALLEY AREA, AND THESE
POPULATIONS ARE OVERWHELMINGLY LATINA.
I'M PUERTO RICAN, TALK ABOUT
DISCRIMINATION.
I FEEL IT.
IT IS IN LAYERS.

WHAT WE HAVE DONE IS STARTED A PROGRAM. 9
MY BLACK BACKGROUND IS, I'M -- WAS A HEALTH
EDUCATOR FOR PLANNED PARENTHOOD, SO I TOOK
ALL OF THAT SEXUALITY INFORMATION AND
COMBINED IT.
AND WE'RE DOING TERRIFIC WORK IN RIVERSIDE
COUNTY, AND THE WOMEN WANT THIS
INFORMATION.
I -- WHAT CAN WE DO?
I DON'T KNOW.
BUT THERE'S A LOT OF GOOD ORGANIZATIONS OUT
THERE THAT, IF WE DID SOME ORGANIZED
PLANNING, I'M LOOKING AT ORGANIZATIONS,
WOMAN ORGANIZATIONS, PLANNED PARENTHOOD,
AND THEY'RE PROVIDING THESE SERVICES.
AND IF WE CAN SOMEHOW COMBINE OUR ENERGY
AND EVEN LOOK AT FAMILY PLANNING FUNDING TO
ADDRESS WOMEN WITH DISABILITIES, THERE'S SO
MUCH ENERGY OUT THERE, I'D LIKE TO SEE US
DO SOMETHING POSITIVE TO ADDRESS WOMEN WITH
DISABILITIES.
[ APPLAUSE ]

>> Leslie Wolfe: IT WOULD BE WONDERFUL TO
BE ABLE TO REPLICATE YOUR PROGRAM IN OTHER
COUNTIES, AS WELL.
ARE THERE OTHER QUESTIONS OR COMMENTS?

>> IMAGINE THAT, A RAMP IN THE STATE HOUSE
WHERE YOU WANT IT TO BE.
MY NAME IS INGRID TICHER, FOR EQUAL RIGHTS
ADVOCATES IN SAN FRANCISCO, BUT I'VE SORT
OF BEEN ALL OVER THE GRASS ROOTS WOMEN'S
MAP.
WHAT I WANTED TO TALK ABOUT TODAY IS JUST A
COMMENT, AN INCIDENT THAT HAPPENED AT A
TRAINING THAT I WENT TO A COUPLE OF YEARS
AGO THAT SEEMS TO SPOTLIGHT A PROBLEM.
I WAS AT A DISABILITY RIGHTS CONFERENCE.
ONE OF THE WORKSHOP LEADERS WAS DOING
SOMETHING ON DIVERSITY IN THE WORKPLACE,
VERY GOOD TRAINING.
AND AS WE WERE LEAVING IT, SHE SAID TO ME
IN A PRIVATE ASIDE THAT NO ONE IN HER
WORKPLACE KNEW IT, THAT SHE HAD A
DISABILITY.
AND THIS WAS A WOMAN WHO I THINK PROBABLY
SELF-IDENTIFIED IN A NUMBER OF OTHER
DEMOGRAPHIC AREAS.
AND YET THIS WAS ONE WHERE SHE DID NOT FEEL
COMFORTABLE DISCLOSING THIS IN HER
EMPLOYMENT PLACE.

AND AS A PERSON I THINK WHO, DESPITE MY
RELATIVE YOUTH, OFTEN FEELS LIKE AN ELDER
STATESWOMAN IN MY OFFICES AROUND
DISABILITY, BECAUSE I'VE HAD ONE SINCE
BIRTH, THIS REALLY TROUBLED ME.
AND WHEN I'VE HAD THE OPPORTUNITY, WHICH IS
RARE, TO SPEAK WITH OTHER WOMEN WITH
DISABILITIES ABOUT THIS, ONE THING SEEMS TO
COME OFF AROUND THE WORD DISABLED.
AND UNFORTUNATELY THE PROBLEM IS THAT THE
WOMEN IN THIS ROOM DON'T HAVE A PROBLEM
WITH THAT WORD, BUT A LOT OF WOMEN DO.
LOT OF MEN DO, TOO.

AND I KNOW A LOT OF WOMEN WHO HAVE WHAT
THEY WOULD CALL AN IMPAIRMENT WOULD NEVER
SAY THEY WERE DISABLED, AND YET THEY HAVE
ASTHMA, THEY HAVE DIABETES, THEY HAVE A
HEART CONDITION.
AND I GUESS I JUST WANTED TO SAY MAYBE IT'S
A WHOLE OTHER DISCUSSION, BUT WHEN IT COMES
TO HEALTH, WHAT YOU CAN'T SAY, YOU CAN'T
TREAT.
AND THAT SITUATION ABOUT WHAT WE'RE GOING
TO IDENTIFY AS SEEMS TO BE A BIG -- A BIG
BARRIER TO OVERCOME.
SO I APPRECIATE THAT WE ARE ALL OUT AND
PROUD HERE, AND I HOPE THAT WE CAN GET MORE
WOMEN TO DO THE SAME.
THANK YOU ALL.

>> Leslie Wolfe: THANK YOU.
ARE THERE OTHER COMMENTS, QUESTIONS,
THOUGHTS, IDEAS?

>> MY NAME IS CLAUDIA HIDEK, AND I'M THE
BRANCH MANAGER OF FREED IN MARYSVILLE,
INDEPENDENT LIVING CENTER.
I HAVE HAD THIS SUBJECT OF WOMEN'S HEALTH
AND VIOLENCE AGAINST WOMEN WITH
DISABILITIES, SORT OF LIKE MY PET PROJECT.
I HAVE DONE SO MUCH READING AND STUDYING ON
THIS SUBJECT.
I WAS A NURSE AT ONE TIME, DESPITE SO MANY
GOALS AND TEACHERS SAYING THAT IT COULD NOT
BE DONE, THAT A PERSON WHO WAS DEAF COULD
NOT BECOME A NURSE.
AND YET I WAS QUITE SUCCESSFUL.
I'D DO PATIENTS ON RESPIRATORS SO WELL
BECAUSE I COULD READ LIPS.

ONE THING I REALLY THINK WE NEED TO ADDRESS
IS THE ISSUE OF INSURANCE.
AND WHEN YOU HAVE THE GATE KEEPER ISSUES,
ON INSURANCE PLANS, AND PERHAPS A WOMAN
WITH A DISABILITY WHO DOES NEED A
SPECIALIST, THAT THE INSURANCE PLANS DO NOT
INCLUDE THE FACT THAT SHE HAS TO GO THROUGH
THAT GATE KEEPER WHO MAY NOT BE REALLY
EDUCATED, AND SHE NEEDS THAT SPECIALIST
CARE.
AND WE REALLY NEED TO ADVOCATE THAT
INSURANCE PLANS, YOU KNOW, ALLOW FOR THE
FACT THAT YOU CAN GO TO A SPECIALIST, AND
SHE CAN USE THAT PERSON AS HER GATE KEEPER.

AND ALSO, FOR THE FACT THAT INSURANCE PLANS
DON'T INCLUDE REHABILITATION ISSUES.
AND FOR A LOT OF WOMEN WITH DISABILITIES,
THEY DO NEED THAT REHABILITATION TO STAY
HEALTHY.
AND WHEN THEY DON'T HAVE THAT
REHABILITATION, THEIR DISABILITY BECOMES
MORE SEVERE, AND IT STARTS CAUSING OTHER
PROBLEMS THAT THEY OTHERWISE WOULD NOT
HAVE.
AND SO YOU HAVE A SITUATION THAT COMPOUNDS
ITSELF.
AND IF YOU HAD ALLOWED THAT REHABILITATION
TO BE IN PLACE, IT WOULD HAVE BEEN FAR
CHEAPER, LESS EXPENSIVE, THAN ALLOWING IT,
YOU KNOW, ALLOWING IT TO GO ON WITHOUT THE
REHABILITATION, AND THEN YOU HAVE THESE
OTHER PROBLEMS THAT WE'RE HAVING TO PAY
FOR.
THANK YOU.

>> Leslie Wolfe: THANK YOU VERY MUCH.
[ APPLAUSE ]

>> JESSIE LORENZ, INDEPENDENT LIVING
RESOURCE CENTER IN SAN FRANCISCO, AND A
WOMAN WITH A DISABILITY.
I CREATED A FLYER THAT'S OUT ON THE TABLE
OUTSIDE THE ROOM ON COMMUNICATION ACCESS
FOR WOMEN WHO ARE DEAF, BLIND, WHO ARE
BLIND, HAVE EITHER SPEECH OR COGNITIVE
IMPAIRMENT.
AND THESE ISSUES SUCH AS SIGN LANGUAGE
INTERPRETING, GETTING INFORMATION TO WOMEN
IN LARGE PRINT OR BRAILLE OR OTHER
ALTERNATIVE FORMATS, THESE THINGS OFTEN ARE
NOT ON THE RADAR SCREEN OF HEALTH CARE
PROVIDERS.

MANY TIMES WOMEN WHO ARE DEAF MAY NEED A
SIGN LANGUAGE INTERPRETER, AND THEY ARE
GOING TO NEED ONE ANY TIME THEY GO TO THE
DOCTOR, BUT THEY EXPERIENCE BARRIERS
BECAUSE THE FILE IS NOT FLAGGED OR TAGGED
TO SEE THAT THAT IS SOMETHING THAT THEY MAY
NEED.

I WANT TO JUST THANK YOU FOR HAVING THIS
HEARING.
SITTING OUT IN THE AUDIENCE AS SOMEBODY WHO
HAS LIVED WITH A DISABILITY SINCE BEFORE
DAY 1, YOU'RE TELLING MY STORY.
I WAS POKED AND PRODDED AND, YOU KNOW, THE
EVER-WILLING CHILD EXPERIMENTED ON BECAUSE
OF MY GENETIC ABNORMALITIES
AND I JUST REALLY APPRECIATE YOU BRINGING
THAT STUFF OUT INTO THE LIGHT.
SO THANK YOU.

>> Leslie Wolfe: IS THERE ANOTHER COMMENT
OR QUESTION?
WE ARE -- I THINK JENNIFER IS GOING TO HAVE
ALMOST THE LAST WORD.
DID I MISS SOMEBODY?
WILL YOU COME FORWARD?
I HAVE TO SAY THAT I THINK WE HAVE -- I MAY
SPEAK FOR THE WHOLE PANEL OR ONLY FOR
MYSELF, BUT I THINK WE'VE ALL BEEN LEARNING
A GREAT DEAL FROM LISTENING TO YOU AS YOU
HAVE COME FORWARD TO TALK.
ONE OF THE THINGS THAT'S AFFIRMED FOR ME AT
LEAST IS WE MUST CONTINUE THE WORK WE 10
STARTED SO LONG AGO ON ISSUES SUCH AS
VIOLENCE AGAINST WOMEN AND GIRLS WITH
DISABILITIES AND THE ISSUES OF REPRODUCTIVE
RIGHTS AND HEALTH.
AND I WOULD LIKE TO SAY THAT OUR SISTER
BARBARA WAXMAN WOULD BE REALLY HAPPY IF SHE
WERE ABLE TO HEAR US TALK THIS WAY, BECAUSE
SHE DID TALK ABOUT VIOLENCE AGAINST
DISABLED PEOPLE AS A BIAS-MOTIVATED HATE
CRIME.
AND WE WORKED TOGETHER ON THAT ISSUE IN
1991, AND SHE DEVOTED MOST OF HER CAREER TO
THE ISSUE OF REPRODUCTIVE RIGHTS AND
HEALTH.
SO I'M REALLY GRATEFUL TO HEAR ABOUT THE
RIVERSIDE PROGRAM, AND WE WILL HAVE A GREAT
DEAL MORE TO SAY AND DO NATIONALLY ON THESE
ISSUES.
THANKS.

>> MY NAME IS RHONDA JACKSON.
I'M NOT ASSOCIATED WITH ANY ASSOCIATION
YET.

>> Leslie Wolfe: I'M AFRAID YOU WILL BE.

>> SOME RECENT EXPERIENCES REALLY UPSET ME,
AND I HAVE A NUMBER OF AUTOIMMUNE
DISORDERS, BILATERAL HIP REPLACEMENTS, AND
CHRONIC PAIN PROBLEM.
AND I MOVED HERE FROM COLORADO AND
ATTEMPTED TO GET MEDICAL CARE AT U.C.
DAVIS. AND THE FIRST PRIMARY CARE PHYSICIAN
I SAW LOOKED AT THE MEDICATIONS I AM ON, I
TAKE ABOUT 15 MEDICATIONS, WHICH ARE PAIN
MEDICATIONS, AND HE LOOKED AT THE LIST, AND
HE SAID THAT HE DIDN'T TREAT PEOPLE LIKE
ME, AND THAT I COULD LEAVE, AND THAT NO
OTHER PRIMARY CARE PHYSICIAN IN THE U.C.
DAVIS MEDICAL SYSTEM WOULD ACCEPT ME AS A
PATIENT.
AND SO I GOT BLACKLISTED, AND EVERY DOCTOR
THAT I GOT, I WOULD MAKE THE APPOINTMENT,
AND THEN THE NURSE WOULD CALL AND CANCEL
IT.

AND WHEN I FINALLY SAW A DOCTOR IT WAS ONLY
BECAUSE HE AGREED, I HAD TO AGREE THAT HE
WOULD NOT PRESCRIBE ANY PAIN MEDICATION FOR
ME.
SO AFTER FILING NUMEROUS COMPLAINTS, AND
TALKING TO NUMEROUS ORGANIZATIONS, AND
TRYING EVERY WAY TO GET AROUND THIS, THE
ONLY WAY THAT I GOT A DOCTOR WAS THAT MY
BROTHER CALLED GUEST SERVICES AND
THREATENED TO GO TO CHANNEL 10.

AND I EVEN HAD AN APPOINTMENT THROUGH THE
PAIN MANAGEMENT SYSTEM, AND THAT DOCTOR
CALLED THE PRIMARY CARE PHYSICIAN AND SAID,
THIS IS LEGITIMATE, AND HE STILL REFUSED TO
PRESCRIBE ANY PAIN MEDICATION FOR ME.
SO I SUFFERED FOR SIX MONTHS TO THE POINT
WHERE I COULD BARELY WALK, AND I WAS IN A
WHEELCHAIR AGAIN.

AND I JUST THINK THIS IS A REAL PROBLEM
HERE, ESPECIALLY IN CALIFORNIA.
BECAUSE COLORADO THEY DON'T HAVE THE
TRIPLICATE PRESCRIPTIONS.
YOU CAN'T CALL IT IN, BUT YOU DON'T NEED
SPECIAL PRESCRIPTIONS, AND NOTHING IS
TRACKED THE WAY IT IS HERE.
AND I WAS READY TO GO BACK JUST BECAUSE OF
THIS ISSUE.
BUT I FELT THAT IT WAS A RACE ISSUE, NUMBER
ONE, THAT HE LOOKED AT ME, HE SAW A BLACK
WOMAN, "OH, SHE'S A DRUG ADDICT, SHE'S JUST
A DRUG ADDICT AND SHE'S JUST HERE TO GET
DRUGS."

AND AFTER EXPERIENCING THIS, I'M VERY
INTERESTED IN ALL OF YOUR ORGANIZATIONS,
AND I WOULD LIKE VERY MUCH TO PARTICIPATE,
AND I'M GLAD YOU'RE HERE.

>> Leslie Wolfe: AND WE'RE SORRY THIS IS
THE WAY YOU HAVE BEEN BROUGHT INTO THE
ADVOCACY COMMUNITY.
HOWEVER, I THINK YOU'RE NOW AN ADVOCATE.

>> YES, MOST DEFINITELY.

>> Leslie Wolfe: I THINK YOU DON'T WANT
THIS TO HAPPEN TO OTHER PEOPLE, AND I THINK
WE MIGHT ASK OUR LAWYERS WHO ARE HERE TO
GIVE ADVICE AFTERWARDS.

>> THANK YOU.

>> Leslie Wolfe: THANK YOU SO MUCH.
AND I BELIEVE WE ARE ALMOST OUT OF TIME, SO
WE ARE GIVING JENNIFER THE LAST WORD, AND
WE ARE ALSO THANKING HER FOR EVERYTHING
SHE'S DONE TO MAKE TODAY HAPPEN.

>> I WANT TO THANK THE PANEL SO MUCH.
THIS HAS BEEN SUCH AN IMPORTANT
PRESENTATION.
AND I THINK A LOT OF THE ADVOCATES IN THE
AUDIENCE HAVE DEVELOPED INTERESTING IDEAS
FOR LEGISLATION AS A RESULT OF THIS.
I WANT TO ASK SOME QUESTIONS.

I'M JENNIFER RICHARD FROM THE OFFICE OF
SENATOR KUEHL.
WE'VE HAD FOCUS OF LOOKING AT
DISCRIMINATION WITHIN THE EDUCATIONAL
CONTEXT.
MANY HIGH SCHOOLS PROVIDE HEALTH EDUCATION,
AND ALSO, SEX EDUCATION, AND I'M WONDERING
ABOUT THE ACCESSIBILITY OF THAT EDUCATION
THAT STUDENTS' EXPERIENCES HAVE BEEN AND
WHETHER IT HAS BEEN APPROPRIATE AND
SENSITIVE TO THE NEEDS OF STUDENTS WITH
DISABILITIES.

AND I ALSO WANTED TO LET YOU KNOW ABOUT
LEGISLATION THAT SHEILA IS OFFERING THAT
PLANNED PARENTHOOD AND THE ACLU ARE
SPONSORING THAT REVISES THE SEX EDUCATION
STATUTES IN CALIFORNIA AND REQUIRES THAT
SEX EDUCATION BE APPROPRIATE AND ACCESSIBLE
FOR STUDENTS WITH DISABILITIES.

>> Leslie Wolfe: AMEN.
I THINK YOU ALREADY KNOW THAT WE HAVE A
GREAT ALLY ON THIS AND MANY OTHER ISSUES IN
SHEILA KUEHL, AND SHE HAS A REALLY
SPECTACULAR STAFF, I HAVE NOW LEARNED IN
THE LAST SEVERAL MONTHS.
AND I HOPE YOU ALL WILL FEEL QUITE
COMFORTABLE TO BE IN TOUCH WITH JENNIFER
ABOUT YOUR THOUGHTS ON THIS AND OTHER
LEGISLATION.
AND I KNOW SHE WILL FEEL SHE HAS NEW ALLIES
IN THE COUNTRY SIDE.

IT APPEARS THAT OUR TIME IS UP.

>> Brenda Premo: ONE OTHER COMMENT BEFORE
WE LEAVE.
TODAY WE ARE ABOUT ISSUES OF YOUNG WOMEN
WITH YOUNG GIRLS, JUNE WOULD CALL THEM
YOUNG WOMEN.
I WOULD ENCOURAGE YOU, THE FIRST STEP IS
KNOWLEDGE, THE SECOND STEP IS ACTION.
OCTOBER 2nd AND 3RD, A CONFERENCE
HAPPENING IN LA, ONE OF THE TRACKS, WHICH A
NUMBER OF US ARE LEADING, SOME YOU, MANY OF
YOU WOULD BE GOOD BECAUSE YOU HAVE
RECOMMENDATIONS.

THE KEY ABOUT THIS CONFERENCE IS, IT IS NOT
ANOTHER CONFERENCE TO TALK, BUT THERE WILL
BE AN AGENDA BUILT FOR POLICY AND
DEVELOPMENT WHICH WILL LEAD TO THINGS THAT
THE SENATOR IS INTERESTED IN IN TERMS OF
POLICY ENFORCEMENT AND EDUCATION.
SO IF ANY OF YOU ARE INTERESTED, I WOULD
STRONGLY ENCOURAGE YOU TO LEARN MORE ABOUT
IT.
AND IF YOU NEED ANYTHING, I'VE GOT CARDS,
AND I CAN SEND YOU THE INFORMATION, OR
CORBETT CAN SEND YOU THE INFORMATION SO
THAT YOU LEARN.
BECAUSE WE WANT TO COME UP FROM THAT TRACK
ON HEALTH CARE WITH SPECIFIC ITEMS THAT WE
COMMUNICATE BOTH ON THE FEDERAL, STATE,
LOCAL, REGULATORY AND LEGAL LINES TO BE
ABLE TO CHANGE THINGS IN HEALTH CARE TO
MAKE IT MORE ACCESSIBLE FOR ALL PEOPLE WITH
DISABILITIES.
SO PLEASE COME, SIGN UP, THERE ARE
SCHOLARSHIPS, AND YOU CAN FIND OUT ABOUT
THOSE AS WELL.

>> Leslie Wolfe: AND DO ANY OF OUR
PANELISTS HAVE FINAL WORDS?
CORBETT? 11
YOU NORMALLY HAVE A FINAL WORD.

>> Corbett O'Toole: AS LESLIE SAYS, I'M
AN OLD LADY, 52 YEARS OLD, AND DOING
DISABLED WOMEN'S WORK FOR 30 YEARS.
AND SOMETIMES I GET A LITTLE DISCOURAGED
ABOUT THE LACK OF DIALOGUE, BUT DAYS LIKE
TODAY I HAVE TO SAY REALLY FOR ME ARE VERY
MOVING.
YOU KNOW THE FACT THAT THERE'S SO MANY OF
US WILLING TO TAKE THE TIME TO COME TO THE
CAPITOL TODAY TO SPEND A COUPLE OF HOURS
TOGETHER TO MOVE THE AGENDA FORWARD FOR
DISABLED GIRLS AND YOUNG WOMEN IS REALLY
POWERFUL, AND THE DIVERSITY OF VOICES THAT
WE HEARD TODAY AND THE DIVERSITY OF
MESSAGES MEAN WE ALL KNOW THERE'S LOTS OF
WORK.
BUT WE ALL KNOW THAT, YOU KNOW, WE'RE THE
WOMEN THAT ARE GOING TO HAVE TO DO THAT
WORK ANYWAY, AND IT'S MUCH MORE INTERESTING
AND MUCH MORE FUN TO BE DOING IT TOGETHER
AND AS ALLIES ACROSS A LOT OF OUR
DIVERSITIES AND ISSUES.
AND I THINK WHAT YOU HEARD TODAY CERTAINLY
MY FAVORITE PART OF THE STATISTICS FROM
SARAH AND ALICE'S WORDS, 90% OF THE YOUNG
WOMEN ARE UNEMPLOYED, NONPROFITS ALWAYS
NEED VOLUNTEERS.
WE JUST DELIVERED A FREE LABOR POOL, AS
LONG AS WE DON'T GET THEM IN TROUBLE WITH
MONEY.
YOU KNOW, IT'S TRUE.
I BELIEVE, I INTENTIONALLY HAD THE
OPPORTUNITY TO ADOPT MY DAUGHTER, I WAS AT
A MEETING AND SOMEONE SAID WOULD YOU LIKE A
BABY, COMPLETELY OUT OF THE BLUE.
TELL ME MORE, IT IS A LITTLE GIRL LIVES IN
JAPAN AND HAS CEREBRAL PALSY.
I SAID IT SOUNDS GOOD TO ME.
BUT IT'S BECAUSE OF WHAT HAPPENED IN THE
ROOM TODAY AND THE PAST 30 YEARS THESE
INFREQUENT BUT ONGOING MEETINGS BETWEEN
THESE GROUPS OF WOMEN, SAY WE CAN REALLY
CHANGE THE WORLD, THE WORLD IS A VERY
DIFFERENT PLACE TODAY THAN IT WAS 30 YEARS
AGO, AND GOING TO BE A DIFFERENT PLACE FOR
OUR DAUGHTERS IN 30 YEARS FROM NOW.
AND IT'S BECAUSE OF THE WORK THAT WE DO
HERE TODAY THAT MAKES ALL THE DIFFERENCE.

>> Leslie Wolfe: DO YOU HAVE LAST WORD?

>> Kathy Martinez: NO, I THINK
EVERYTHING -- I WOULD JUST LIKE TO SAY THAT
AS I SAID BEFORE, IT'S AN HONOR FOR ME TO
BE HERE, AND I'M VERY IMPRESSED AND FEEL
VERY GRATEFUL AND I KNOW THAT CORBETT AND
LESLIE WOULD NEVER HAVE LEFT OUT THE ISSUES
OF WOMEN FROM DIVERSE BACKGROUNDS, AND I'M
HAPPY TO TALK TO FOLKS AFTERWARDS.
THERE'S A LOT OF WORK TO BE DONE IN THIS
AREA AS OUR IMMIGRATION INCREASES, AS THE
IMMIGRATION OF YOUNGER GIRLS INCREASES,
ESPECIALLY IN THE STATE OF CALIFORNIA, AS
COMMUNITIES BECOME MORE SEGREGATED WHICH IS
HAPPENING IN THE LATINO COMMUNITY.
I'M VERY INTERESTED IN THIS AREA, AND
HONORED TO BE HERE WITH ALL OF OUR DISABLED
AND NONDISABLED ALLIES.

>> Leslie Wolfe: AND I'D LIKE TO SAY THAT
WE HAVE BEEN TALKING ABOUT DOING THIS
BRIEFING FOR SOME MONTHS, AND I'D LIKE TO
THINK THAT THIS SINCE WE'VE ONLY TOUCHED A
SLIVER OF THE MAJOR ISSUES, AND WE'VE ONLY
JUST BEGUN TO ENGAGE IN THE POLICY REALM
TALKING SPECIFICALLY ABOUT GIRLS AND YOUNG
WOMEN AND NOT SO YOUNG WOMEN WITH
DISABILITIES, THAT THIS SHOULD BE JUST THE
BEGINNING.
I'D LIKE TO THINK THAT THIS WILL -- THIS
KIND OF DIALOGUE WILL CONTINUE, THAT ALL OF
YOU WILL BE FEELING ENGAGED WITH POLICY
MAKERS, WITH ELECTED OFFICIALS, TO BRING
THESE MESSAGES TO THEM, AND THAT IT ISN'T
JUST AN ADD-ON, "OH MY GOD, WE FORGOT TO
SAY SOMETHING ABOUT DISABLED STUDENTS, OH,
DEAR, ARE SOME OF THEM GIRLS?"

I'M APPROACHING MY 60th BIRTHDAY, WHICH
SEEMS LIKE A MILESTONE, SPEAKING OF
GERIATRICS.
BUT IT SEEMS TO ME 30 YEARS OF DOING CIVIL
RIGHTS FEMINIST WORK THAT IT'S TIME TO
REMEMBER WHERE WE'VE BEEN AND RECOGNIZE
THAT WE ARE NOT IN A POLICY ENVIRONMENT AT
THE FEDERAL LEVEL OR IN MOST STATES WHERE
THE ISSUES WE CARE ABOUT AND THE PEOPLE WE
CARE ABOUT ARE VALUED, AND WE HAVE TO FIGHT
LIKE HELL TO CHANGE THAT.

AND I WOULD LEAVE YOU WITH THE WORDS OF A
VERY DEAR FRIEND AND COLLEAGUE WHO WAS A
MEMBER OF CONGRESS, SHIRLEY CHISOLM, WHO
SAID THE LAW CANNOT DO THE JOB OF WINNING
EQUALITY FOR WOMEN.
WOMEN MUST DO IT FOR THEMSELVES.
WOMEN MUST BECOME REVOLUTIONARIES, AND SO I
WELCOME ALL OF YOU TO SHIRLEY'S
REVOLUTIONARY CADRE.
THANK YOU VERY MUCH.
[ APPLAUSE.]

 

About DWOW | Contact Us | Home

Website maintained by Patricia Chadwick - pchad at disabilityhistory dot org
Updated 3/26/2004