Lawmakers are advancing a bill that would ban a physician from aborting a woman’s pregnancy if that physician believes the woman is ending her pregnancy because of a prenatal diagnosis of a disability. Robbie Gaffney speaks with a disability rights advocate. To hear the conversation, press the play button at the top of this article. A transcription of the conversation is also available below.
ROBBIE GAFFNEY: Olivia Babis you’re with Disability Rights Florida. Let’s begin with how the bill defines disability. It says disability is any disease, defect, or disorder that is genetically inherited including a physical disability, mental or intellectual disability, physical disfigurement, and more—is that how your organization would define a disability?
OLIVIA BABIS: No. I mean to use defect in a bill I think is a little problematic. But what’s really lost in the bill is the social construct of disability. Disability isn’t based strictly on pathology. So, you may have someone with a diagnosis of Down's syndrome. Not everyone’s Down's syndrome looks the same. So, you may have someone with Down's syndrome that is nonverbal. You may have someone with Down's syndrome and there are people with Down's syndrome that have gone to college that have earned PhDs that are college professors. So, we really can’t determine just based on pathology to what degree a diagnosis or an impairment is really going to disable someone. It really is determined more by the social construct, kind of the environment, and the geography where they were born and where they were raised, and the resources and the services, they have access to.
ROBBIE GAFFNEY: So, the bill’s sponsor has said decisions should not be made to end a pregnancy based on disability. What do you make of that?
OLIVIA BABIS: Abortion is a really complicated issue for the disability community. People with disabilities of course were killed in concentration camps in Germany. We’ve had instances of infanticide in the United States where doctors have withheld medical treatment from babies born with disabilities so there is sensitivity to that but on the other side of this people with disabilities have also been denied body autonomy. So, we’ve had forced sterilization in the United States and forced institutionalization. Myself as a woman with a disability I can say that I’ve had doctors when I was in my early 20s offer to perform sterilization procedures just assuming I didn’t want to have kids because I was a person with a disability. We don’t often have what we refer to as the dignity of risk in the disability community. So, say you wanted to go horseback riding. You can sign a waiver, they would let you get on a horse, somebody would give you lessons, you could go. I have to get a permission slip from my doctor and my disability isn’t something that is treated it’s just a characteristic about me so my doctor who treats me for the flu or gives me vaccines occasionally knows nothing about my day-to-day life and my activities, yet this is the person I have to go to who gets to make decisions on what risks I get to take with my body. So, in that regard it really is a complicated decision for people with disabilities and it really is a divisive issue within the disability community. But the problem with the bill is that it doesn’t do anything to improve the quality of life for people with disabilities.
ROBBIE GAFFNEY: So, what would this bill need to do in order to help people with disabilities?
OLIVIA BABIS: I mean, we base our programs that are designed to assist people on antiquated ideas and misconceptions about disability. When Medicaid was set up it was thought that you know, I mean most people with disabilities at that point were in institutional care so it was assumed that if you had a disability you couldn’t work. So, if you could work you didn’t need access to these programs. In the last 40, 50 years we’ve learned that’s absolutely not the case that even people with what are considered pretty extensive disabilities can work when they’re given the right resources. So, what we really need to be focusing on is kind of an overhaul and major reforms of these systems and how they operate to allow people to enter the workforce without losing their healthcare and their personal care support. To integrate them and like I said, that would be more cost efficient with getting them out of institutional care, they’re able to live on their own. It’s not as stressful on their families. You’re not going to have to worry about, you know, if you get a fetal diagnosis of Down's syndrome when you find out you’re pregnant you’re not going to have that fear then of, ‘oh my god is my child going to be 60 years old and still living at home with me when I’m 80 or 90?’ Because you know that child’s going to have access to the supports and resources, they need to have quality of life and to be as independent or interdependent as they can be.
ROBBIE GAFFNEY: Okay, well thank you so much for speaking with me. I appreciate it.
OLIVIA BABIS: Thank you, you’re welcome.
