Disabled Women on the Web

Disabled Women on the Web

Legislative Briefing Papers on Disabled Young Women

BRENDA PREMO

>> 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.

 

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Updated 3/26/2004