Legislative Briefing Papers on Disabled Young Women
Disabled Girls and Health Care: A Mother’s Perspective
By Corbett Joan O’Toole
My daughter is the best kid in the world. Yes, I know you expect to hear that from all mothers. But honestly – even objectively – I have the best kid that I would possibly have.
She is smart – so she keeps me on my toes.
She is funny – so I am always laughing.
She has a wonderful heart – she brings lots of love with her wherever she goes.
She loves adventures – so we have lots of great times together.
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 we are in.
I’m a single mother. And my daughter is my only child. So whatever needs to be done, has to be done by the 2 of us.
At home, we have a lot of control over our environment. So the house is accessible for my daughter – and when something doesn’t work – we make it work.
Now we don’t have much money – I only have disability income –
but we’re creative women – so whatever comes our way –
whether it’s making a 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 and from the environment we spend our time in. Our home allows us both to function independently with no outside assistance – even though we both use wheelchairs, and she has cerebral palsy.
Unfortunately, the people and environments outside our home are often not respectful –
to us as women,
in my daughter’s case, a 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 what can be put into place to make it better for all girls with disabilities.
BARRIERS TO GIRLS DREAMS
My daughter, Meecha, has identified 2 barriers that she wants me to talk to you about today: Uninformed health care providers and lack of accessible equipment.
My wonderful daughter is 10 years old. In her short life, she has had over 150 medical appointments. And each time she is seeing a new doctor, regardless of the doctor’s medical specialty, we are asked “What’s wrong with her legs?” The more sensitive ones say: “Hi, how you doing? What’s wrong with her legs?” After 1 or 150 times, it gets very old.
This approach makes Meecha feel very uncomfortable. So when she is in pain with an earache, she chooses to live with the pain for a day or 2 until she can see her regular doctor.
When she is forced to visit a new doctor, before we go in, she asks me to talk to the doctor for her. Many doctors misinterpret this as lack of cognitive function. So they increase their insensitive behavior. It quickly becomes a vicious circle.
And it never seems to enter their minds that they have offended her and she is reacting appropriately.
Her childhood medical experiences have been overwhelmingly, although 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 get very worried about this inability to see my daughter as a girl beyond her 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 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 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 her as a “broken body” and she only sees them as uninformed and disrespectful, then they will never create the patient-provider relationship needed to transmit important health information.
Meecha would like all medical providers to be required to:
1. get training in learning that girls with disabilities are girls first,
2. that asking about what is wrong with her legs is offensive (she suggests asking “what brings you in here today?”), and that
3. there is a system of evaluating providers from the perspective of a girl with a disability to see if they are treating disabled girls right.
LACK OF ACCESSIBLE EQUIPMENT
The other big issue that Meecha wants me to tell you is about the problems with the physical environment in health care.
Yes, she can get in the door (tho often not by herself) and
yes, she can often use the toilet –
but she has never had an accessible examination table (neither have I), or an accessible x-ray table, or accessible weight scale, or health education materials on audiotape or in 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 do it.
Health care providers usually expect the mother to do this – resulting in lots of back injuries for mothers of disabled kids.
At home and at school she 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.
Meecha is just one of half a million disabled girls in California who are asking these questions. It is important – for them and for us – that we make health care work for all girls and women. Because as we all get older, we’re going to need exactly what these girls need.