DREDF, Health Care Stories.
Thank you for joining us this evening and welcome to excerpts from our Health Care Stories
series where people with disabilities share common everyday experiences about going to
the doctor, having medical tests, or being treated in the hospital.
We know that the barriers to care they describe contribute to health disparities and sometimes
shorten the lives of people with disabilities.
Being downloadable, health care stories are helping to bring these barriers to light for
students training to work in the health care field, health care providers, public health
officials, first responders, policy makers, and disability advocates.
Go to www.dREDF.org forward slash health care dash stories to view the complete interview
collection.
Now, let's meet a few friends.
My name is Mary Delgado and I live here in Chicago.
I went five years without a pap smear because I could no longer get up on the table.
So I told my doctor, I need a pap smear.
She said, oh, you know, you do need a pap smear.
And then, and then she said, I need, I need one with the tables low so I can, I can scoot
over there.
She said, that's a great idea.
Find one.
My name is Michael Og.
I live here in Princeton, Junction, New Jersey.
Just before I was hospitalized at the doctor who examined me and then sent me to hospital.
Again in his doctor's office, he had an examination table, but no transfer equipment.
He worked single-handedly.
Actually the first time I saw him, he got his secretary to help transfer me.
Generally secretaries don't like having to lift people.
It's not their job, and they shouldn't be doing that, and they're certainly not trained
to do it.
I don't think I've been to any single doctor's office where they've actually had transfer
equipment.
I'm the niece of a judge in Princeton who's the one that accompanies the love of his life.
I'm the niece of a fortune-teller of women in an office where my impression is she is
a fortune-teller.
I'm the niece of a fortune-teller.
My name is Larry Voss.
I live in Derry, Illinois, suburb of Chicago.
I had a lot of discomfort in my abdomen.
It was diagnosed originally as a bowel obstruction, and it was recommended by him that I have
an MRI.
But when I went there, we found out that there was no way that physically they could get
me as a wheelchair user, an event user, onto the exam table that they used for the MRI.
So finally, we did get a call from the nurse that she had found an accessible facility.
This took about nine months in total.
They found that it had originally been a much smaller growth that they detected had become
almost double the size.
Elizabeth Grigsby.
So my hospital stay ended up to be five months, but I had to transfer me several times a day.
But nobody was listening to me.
They were like, we do this every day.
We know what we're doing.
When you went up to live me, you heard this loud pop in my knee.
I was sent an excruciating pain that, again, I'm not a cryer usually, but all I could do
was cry and I felt like I was being treated less than a human being.
My name is Jennifer Thomas.
I'm 35 years old as typically happens on a maternity floor.
The lactation consultant comes in and visits.
And she said to me, I have CP, so I have use of my left hand, my right hand as I often
say is just for decoration or support.
The lactation consultant said to me, well, you have twins, so you've got to do this
twice.
I said, that's fine.
She said, can you turn your hand like a football?
I said, yeah, on this side I can.
This side, not so much.
She then said to me, well, then you can't breastfeed.
I had a friend who was an occupational therapist just down the street.
I called her and I said, look, I really need to ask you an embarrassing question.
Can you come here and help me?
She said, are you not going to be shy?
I said, no, I'm not.
Because this medical professional doesn't know what she's doing.
I was crying because I wanted to be able to at least attempt to breastfeed my children.
Fandaloach.
At one point in my last film, I noticed that my right leg was hurting, so finally the resident
that was covering that floor, I said to him, my right leg is broken, and he wouldn't believe
me.
Right away, he should have said to me, oh, okay.
He should have said, oh, wow, she has all I, she knows what a broken leg feels like, and
she's telling us their leg is broken, we should act on that.
Larry Voss.
The first surgeon I saw recommended a procedure called a hemipelvectomy, which involved removing
part of my pelvis and my entire leg because of the location of the tumor, and when I expressed
a lot of concern about this, he expressed his opinion that he didn't see why that would
make a big deal to me since I wasn't walking anyway and was wheelchairing, sir.
Michael Og.
The last time I was weighed in the doctor's office was when I could last stand on my own
two feet, which was well over 10 years ago.
Alice Wong.
I think you'd be asked any person with a disability, these issues are part and parcel
with everyday experiences.
Healthcare Stories.
Made possible with generous support from the Special Hope Foundation and the Manuel D.
Enrota Mayerson Foundation.
Organizations, institutions, and individuals who have used, featured, or referenced healthcare
stories include Chicago's Access Living, Common Health, Health Affairs Blog, Massachusetts
Bay State Medical Center, National Center for Health Statistics, New Jersey Middlesex
Community College, New York Times, Niagara University First Responders Training, Ohio
Medical Association, Ohio State University Nassonga Center, San Francisco General Hospital,
Silicon Valley Independent Living Center, Special Hope Foundation, Syracuse University,
Department of Public Health, School of Social Work, Tufts University Medical School, University
of California, San Francisco, Department of Clinical Pharmacy, Vice Chancellor of Diversity,
University of Connecticut Schools of Nursing and Medicine, US Department of Justice, Western
University of Health Sciences.
