Disability Rights and Reproductive Rights are About the Ability to Control One’s Own Body

The disability rights movement and reproductive rights movement both revolve around the ability to control one’s own body and life. Sam Crane, Legal Director at the Autistic Self-Advocacy Network, talks to us about the disability rights movement’s long history of facing reproductive rights and reproductive autonomy restrictions, and why centering the experiences and voices of people with disabilities will increase access to basic reproductive healthcare.  

 People with disabilities have encountered an extensive history of attacks on their reproductive health, rights and justice through the eugenics movement, forced sterilization, guardianship, and institutionalization. And, unfortunately, people with disabilities continue to experience unique and disproportionate barriers to accessing reproductive health care each day. For example, legal rights and protections do not necessarily offer meaningful support, which will address people of color, LGBTQ+ people, people with low-incomes, and people with disabilities more acutely (Roe v. Wade provides a theoretical right to abortion but does not address any logistical roadblocks to accessing care).

Another barrier includes discrimination or stereotypes in healthcare settings (providers often do not ask people with disabilities about contraceptive options or abortion needs, and many people with disabilities may not trust healthcare providers due to the previously mentioned long history of attacks on reproductive health). Additionally, religious refusals prevent those with disabilities from attending healthcare appointments or taking contraception. There are also a variety of barriers those with disabilities face related to accessing reproductive healthcare. Many with disabilities rely on insurance coverage through Medicaid—but the Hyde amendment prevents federal dollars going toward coverage of abortion care. Lack of access to/ability to use transportation also prevents many from getting to a healthcare provider.

 The ability for people with disabilities to not only be able to access reproductive healthcare, but be fully realized in their reproductive rights and bodily autonomy ties directly to the current state of reproductive health in the U.S. Any successful attack on Roe v. Wade will no doubt distinctively impact those who are the most marginalized. At all levels of government, policy must be passed that centers the experiences of those with disabilities accessing reproductive healthcare. At the federal level, applicable policy includes the EACH Act, the Women’s Health Protection Act, and the Home and Community-Based Services Access Act.

Links from this episode

Autistic Self-Advocacy Network’s Report: Access, Autonomy, and Dignity: A Series on Reproductive Rights and Disability Justice
Autistic Self-Advocacy Network on Twitter
Autistic Self-Advocacy Network on Facebook
Information on the EACH Act

Transcript

Jennie: Welcome to rePROs Fight Back, a podcast where we explore all things reproductive health, rights and justice. I'm your host, Jennie Wetter, and I'll be helping you stay informed around issues like birth control, abortion, sex education and LGBTQ issues and much, much more-- giving you the tools you need to take action and fight back. Okay, let's dive in.

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Jennie: Welcome to this week's episode of rePROs Fight Back. I'm your host, Jennie Wetter, and my pronouns are she/her. Y'all. This is our first episode of 2022. I cannot believe it is 2022 already. I really feel like I didn't get used to it being 2021. Like I'm not really sure where the whole last year went, it went so fast. I was home and I got to see my family. I was in Wisconsin for 10 days and it was so nice. It was nice to leave DC and just be somewhere else. That was also nice. And, you know, I flew for the first time since the pandemic and I got really lucky. I know there were so many flights that got canceled or really delayed, and I had no problems either way and it was a lovely trip. And when I got home, we, we ended up just staying home and not going anywhere or seeing people. We just decided with the new variant, we needed to be really careful with my dad and not expose him to anything. So it was nice. It was really low key. I did a ton of reading, lots of baking. My parents’ freezer was definitely full of lots of baked goods when I left. And then when I got back to DC, I was able to have some quiet time before jumping right back into work. So overall it was a really relaxing break. I really tried to stay disconnected from the news and social media and was really able to just relax, which was needed. You know, the one bad thing was I was in the middle of a comfort rewatch of the Great British Baking Show. And I went to bed on Christmas Eve. I mean, sorry, Christmas Eve, uh, New Year’s Eve, getting right to the finals of season two, when I got up on Christmas day going to watch it and it wasn't there anymore. I didn't realize they were taking the early seasons of the Great British Baking Show off of Netflix. I was so bummed. It's just such my comfort happy place. They still have like the newer seasons, I think starting from series five, they're all up on Netflix still. But man, I it's just, I… I'm gonna miss the Mary Berry and the Mel and Sue seasons. I really loved those. So it's a little bit of a bummer that they're gone. I hope they show up somewhere. I hope somewhere else picks up their licensing. So we can watch those early seasons still, but don't worry. I picked right back up and was started watching series five. So it's not like the end of the world, but it was a total bummer. And I was so confused. That's why I couldn't find it and had to do a bunch of Googling online to be like, what happened? Where did they go? There has been a lot of snow in DC, which has been lovely mostly cuz you know, again, working from home. So I don't have to be out in it. It was just beautiful to watch lots of snow and I've enjoyed it. It's I, you know, I'm from Wisconsin. So we get a lot of snow and I, I kind of miss that when I'm here DC doesn't get nearly as much, but having two snowfalls in one week was pretty delightful. I, I would do say so myself and from my window, I can see there's like a little hill near my apartment and I can see kids out sledding on it and stuff. And it just made me so happy. Just the little things. And I think that's it, you know, nothing too big or exciting. I think, you know, mostly my break was just very relaxing, had a lot of time to do things liked to do, which was much needed.

Jennie: Okay. So I am so excited for y'all to hear this week's episode. I have been wanting to cover disability rights and reproductive rights for so long. And I am so excited that we are finally making that happen this week on the podcast. I have Sam Crane from the Autistic Self-Advocacy Network on here to talk all about reproductive health and rights and disability rights and justice and why we need to be talking about the two of them together. It is such a wonderful conversation. Y’all, I hope you enjoy it as much as I did. And with that, let's go to my interview with Sam.

Jennie: Hi Sam. Thank you so much for being here today.

Sam: Hi, it's nice to see you.

Jennie: So before we dig into this topic, do you wanna take a second and introduce yourself and include your pronouns?

Sam: Hi, I'm Sam Crane. My pronouns are she/they, and I'm the Legal Director at the Autistic Self-Advocacy Network, which is a nationwide nonprofit run by and for autistic people ourselves.

Jennie: Great. I am so excited to have you on today. Disability and repro is one of those topics I have been wanting to cover on the podcast for so long and I feel so bad that I kept dropping the ball. But when I saw y'all's report, I was like, I have like a specific reason to like make this happen now. So I'm so excited to have you here today.

Sam: Well, it's definitely a really important issue to me, both professionally and personally. So I love to talk about it.

Jennie: Okay. So maybe we'll start kind of at the beginning. Why are we talking about it? Like why talk about the intersection of reproductive health and disability rights and justice?

Sam: There's been a long history of this being a really important intersection of issues in particular, the disability rights movement has had a lot of history of, um, facing restrictions on reproductive rights and reproductive autonomy. Starting with the eugenics movements; there were pretty significant state sponsored efforts to [impact] disabled people and particularly disabled women of reproductive autonomy through forced sterilizations and institutionalization. I think a lot of people don't realize that institutionalization was often explicitly intended to keep people out of society so that people would not have the opportunity to form families. In addition, there's always been a little bit of tension, back and forth between the disability community and the reproductive rights community. Historically the reproductive rights community has ties to eugenics movements. Currently, reproductive justice movements have pretty solidly rejected eugenics, but that history has caused some sort of distrust, I would say between certain parts of the disability community and the reproductive rights community on an ongoing basis. I think that there's been an issue where these, these movements aren't necessarily talking to each other in the ways that they should, especially considering how critical an issue this is to people with disabilities, especially people with disabilities who might become pregnant.

Jennie: Yeah, for sure. And I think you saw that really like flare up, I guess last summer when there was all the conversation around Britney Spears, you started to see some of those conversations become more explicit in the broader public than it had been in other circles.

Sam: Right. And that really ties into the history of sterilization of disabled people. You know, in, in the past, these efforts were often state sponsored where the state had explicit laws on the books permitting sterilization of people with disabilities. Those are, laws are no longer explicitly followed, but a lot of times people with disabilities face forced sterilization by family members or forced, you know, IUDs or use of long term contraceptives. So this, this definitely still happens. And I think it was really eye-opening for a lot of people to see that it still happens.

Jennie: Yeah. And I think it was a good opportunity for people to see, like even if it could happen to her, like to see like, oh, this is happening to so many other people and like being, you saw that conversation switch pretty quickly. I think between like focusing just on her to being like, we need to have this broader conversation about all of the people who are having to deal with this.

Sam: And I think the, the fact that Ms. Spears is someone who had the media attention on her and had a lot of, you know, advantages in that she's, she's pretty wealthy. She's got what I would call, you know, pretty good communication skills to say what she does and doesn't want when people saw that this was happening to her. I think that people realized, oh my gosh, what, what must be happening to other people who don't have that kind of national voice? Yeah.

Jennie: I think another reason to talk about these two issues together, repro and rights and disability justice is that they do have a lot in common when you look at them.

Sam: Right. Both are about resisting attempts to control our lives and control our bodies.

Jennie: Yeah. And I think it's really important that we kind of are talking about them together and lifting up those shared values.

Sam: Exactly-- the right to bodily autonomy and self-determination is so important to people with disabilities and to really anyone who might want to have children or not want to have children, especially since, you know, a lot of the time disabilities affect our experiences of reproduction pretty profoundly.

Jennie: Yeah. So maybe I'll dig into some of those unique concerns. I think the reports that you all put out did a really great job of going through that. So maybe let's talk through some of them or what are some of the unique needs or challenges that people with disabilities encounter when accessing reproductive healthcare, whether it's birth control or sex ed or abortion, or even parenting, like all of this is part of the same conversation. So what are some, some of the unique challenges or needs?

Sam: So, I think one of the things that we see often is that legal rights and protections for a lot of the time, they're not there, but even when they are there in theory, they don't necessarily offer meaningful access or support in practice. So for example, with Roe v. Wade, especially now, there are a lot of people who might theoretically have a legal right to access abortion, but there are so many roadblocks in place. It is practically not available to them. This is going to especially affect people who have other marginalized identities, like people of color, people who are low income and people with disabilities. If, for example, you have to go to a clinic that's 60 miles away from your home twice, that's going to be especially hard for someone with a disability who is living on an incredibly low income who cannot drive probably often doesn't have a car. A lot of people with disabilities do drive, but a lot of people with disabilities cannot drive because of their disability. They might have access to public transportation or paratransit, but that paratransit or public transportation doesn't leave their immediate area. So they can't necessarily use it to get to the abortion clinic. That kind of thing can make it incredibly difficult to access abortion. Similarly, with the right of individuals, to parent their children, if you have a right to parent children, but you don't have access to the supports and services that you need in order to do it, let's say you're able to get home and community-based services to help you dress yourself and make your own meals. But the state is refusing to provide those services, to help you dress, watch your children, and make your children's meals and effectively your right to parent is being taken away. Another barrier that people with disabilities face is obviously discriminatory attitudes and stereotypes about what we need, want, or are capable of. And that includes providers in healthcare settings. For example, providers often don't ask people with disabilities about contraception or abortion needs because they assume that people with disabilities aren't having sex or can't have children, which is not true for many of us. They ultimately might assume that anyone with a disability who is pregnant will want an abortion or anyone with a disability who could get pregnant, will want to take steps to prevent it. When many of us in fact do want to get pregnant and do want to start families-- that history of forced sterilization and institutionalization means that a lot of people are afraid to trust their doctors and the use of guardianship often and can really interfere with doctor patient relationships because people might be afraid that anything they communicate to their doctor will then be communicated to their guardian and they won't have privacy. And these intimate conversations about reproductive health.

Jennie: Yeah, that seems, I mean, just so many layers, right? You have the history, mistrust, worries about privacy. Those are like huge issues in and of themself, but like having all of them kind of in this like together, like that's just so complicated.

Sam: It really is. And I think that it's exacerbated by the fact that, you know, a lot of the time people will not necessarily be thinking about disability when they make policy. So for example, there's a lot of policy around protecting the rights of minors to access abortion or access confidential conversations with doctors. But people don't realize that people with disabilities who are adults often are facing the same exact concerns because their parents or someone else has been appointed as a legal guardian to make these kinds of healthcare decisions for them.

Jennie: Okay. So that's attitudes. And that seems almost insurmountable and just like this huge barrier on its own, but there are others. So what's the next barrier you wanna tackle?

Sam: So guardianship arrangements, which we discussed a little bit already, they really affect every aspect of reproductive health from the decision to use contraceptives to the decision, even to have someone stay over with you overnight, in order to exercise sexual autonomy, decisions often are taken away from people and given to the guardian, which can [rob] people of the right to not only use contraceptives or access abortion, but, you know, do all of the other things that you might want to do regarding your reproductive life, like date or have an intimate relationship or get married. So we, we really have to think about guardianship. Another example is religious refusals by providers, religious refusals often get framed as being just about, let's say a pharmacist refusing to offer contraceptives to someone who has a prescription or, you know, in some cases people might think that it will, you know, affect LGBT people who are seeking healthcare. And that's absolutely true. But people with disabilities are interacting with people…healthcare workers at every single moment of their day. Often people who get home and community-based services, for example, are relying on someone to assist them with dressing, bathing, moving outside the house, transportation to doctor's appointments. And even with helping people take their own medications, people might need assistance with that. So if a person with a disability is in a group home or getting personal care attendant services, and that personal care attendant has a religious objection to assisting that person with taking contraception or assisting a person with going to a reproductive health appointment, that can be catastrophic. There aren't necessarily other people that a person can use to help them with this. And it's often something that will affect really every moment of your life. So a lot of the arguments that people make in, you know, support of religious refusals, which is “just go find another pharmacist,” that's not an option for people with disabilities often who have, you know, only one provider in their area who can provide these kinds of home and community based services or provide them at a level that they need. And in particular, it's important to remember that a lot of home and community-based services providers are religious or run by religious [institutions] so it is a real concern. We've heard of people who experience pretty serious harassment based on religious belief from their home and community-based service provider that, you know, started when they woke up in the morning and ended when they fell asleep. It's really pretty high.

Jennie: Yeah. I have to say when I was reading the report, that was one of the things that I hadn't necessarily thought through all the parts of, right? Like thinking of the barriers of like, even just having the religious refusal of somebody refusing to take you to the appointment or to schedule the appointment. Like that is just something that I hadn't thought about. So, so I found that super helpful to like think through all of the parts, not just like the end parts.

Sam: Exactly. And those religious refusals can also, you know, depending on what the grants are for religious refusal, there are some of the religious refusal regulations are really focused exclusively on things like abortion and other ones are kind of broad RFRA type exemptions. We sometimes see people, you know, refusing to correctly gender a person, or refusing to correctly, you know, assist a person with dressing and grooming. They'll say, I’m, you know, “not gonna to help you wear this piece of clothing because I don't think that that's the right gender expression for you.” So it's a real concern. That's a real concern as well.

Jennie: Sorry, I just had to take a pause like that really just like breaks my heart cuz it's just like such basic human dignity, respect. That's just like the minimum of what you should be getting. And like that just, that really should be for a second there. Okay. religious refusals. We, we already knew they were a problem in repro, but they also extend into so many other things… okay. So I think one of the other areas we had is insufficient access. So different barriers around like affordability around disability and repro.

Sam: Yeah. Uh, there are issues with affordability. A lot of people with disabilities rely on Medicaid to provide their healthcare. And as you know, with the Hyde amendment, Medicaid can't use federal dollars to provide abortion. I believe there are some states that will offer abortion services to Medicaid recipients using just state dollars. And that's great, but there are other states that don't and people who are on Medicaid restricted to an asset limit of about $2,000. If… they're participating in some kinds of programs, they can maybe get higher than that. But the bottom line is that people on Medicaid are living in extreme poverty. As a result, abortion is really not an option for a lot of people. And people end up in, in pretty bad situations because your abortions aren't covered and they can't save up the money to self-pay. A lot of people are also facing access issues in things like transportation and things like, you know, access to the services that they need in order to take advantage of health services. If you can't get to the doctor's office, then you can't access healthcare.

Jennie: Yeah. And I think that really all kind of blends into the, just the general lack of social support around people with disabilities, but also accessing repro in that space.

Sam: Right. And I think I mentioned this earlier, but a lot of, for example, home and community-based services programs will provide in person supports with things like bathing, dressing, cleaning, preparing meals, but they won't provide those supports for parenting tasks. So you can have someone help you dress and help you bathe and help you prepare your own meal, but you can't have someone help you do that with, to help lift your baby out of the tub or give their baby a bottle.

Jennie: I mean, that just really takes away your options, right? Like if you can't get that kind of help, like you can't…

Sam: Mm-hmm and then you, then people might refer you to the child welfare system who will come in and say, you can't care for your child. And therefore we're going to take away custody of your child to give custody to another parent who might not necessarily be the, you know, a good, a good parent.

Jennie: There's just so many layers of like, the doctors may not want to give you the birth control or your, your healthcare worker may not take you to, to the appointment or help you take [medication]. You might not be able to get the abortion if you get pregnant and you don't want to be, and then you can't get the help you need to help you parent. Like it's just terrible.

Sam: It’s a trap for ultimately, you might really, really want to parent and you're being faced with barriers along the way, starting with, you know, inability to have meaningful conversations with your doctor about your plans to become pregnant and then culminating in, you know, a system that's setting you up to fail at, at being able to care for your child. 35 states include disability as the grounds for termination of parental rights. So a lot of kids in foster care, maybe one out of every five children in foster care were removed from their families, at least in part because of a parental disability.

Jennie: That's so many. Wow, wow. One in five.

Sam: Oh, that's according to one study. Um, and those same studies found that for 1 in 20 parental disability was the only reason that children had been removed from their families. Jennie: This's just heartbreaking. Yeah. I mean, all, I feel like all of this is just heartbreaking.

Sam: And I, I have to say, you know, I'm a parent, I was very intentionally a parent and I know other people with disabilities who went through the process of becoming parents. And a lot of people have a pretty significant fear that their disability will be used against them, lose their children because of bias in the child welfare system or bias in the family court system that, you know…that their former partner or the other parent will gain custody of their child by using their disability, against them in court.

Jennie: And again, with the like 1 in 5 or 1 in 20 numbers, like you can absolutely understand that is a very reasonable fear.

Sam: Yeah. We've heard of, you know, the National Federation of the Blind, for example, has seen cases where children were removed from their parents at the hospital without really giving parents any opportunity to demonstrate that they can care for your child based on just this assumption that if you're blind, you must not be able to care for a baby. And that assumption is absolutely false, but it is an assumption that a lot of people, including healthcare workers and social workers often have.

Jennie: Yeah. And I think that goes back to the like, attitudes, right? Cause like there were so many people in that process that could be the person who has like the restrictive attitude to have like reported it. So let's talk about this moment and why this moment makes these issues even more relevant.

Sam: Well, so one thing, and I, I discussed it earlier, but one real concern of ours is that with increasing restrictions on abortion and increasing precariousness of Roe v. Wade, people who are the most marginalized are going to face even more challenges and barriers to accessing abortion care, people are going to have to travel to access abortions. People are going to have to pay out of pocket to access abortions even more than they did before. And that's going to be a real hardship for people with disabilities. People are going to have to make decisions about abortion much earlier than they otherwise would've been required to. And I think that in some cases it's going to make people choose abortion more and faster because let's say you have a disability that might affect your experience of pregnancy. You might decide that, you know, it's too dangerous to wait and see whether or not the pregnancy is going to have medical complications. Because if you wait until that point, um, you might not be able to access abortion at that point. So a lot of people I think, are going to think I it's now or never I'm, I'm going to have an abortion, even if I might otherwise have wanted a child. I think that it's… sorry, no, you're, I just had like a moment where I was like sad about that. I think that we need to really emphasize in these debates that we need to center the experiences of people with disabilities, people of color and people who are low income, because a lot of the time people aren't thinking about the ways that this is going to disproportionately affect people who have these extra barriers to accessing care. And we have to center those experiences and fight harder for policies, solutions that really would make a difference for people with multiple marginalizations.

Jennie: Okay. So this has all been pretty depressing. So let's change it. Let's change it. What can our audience do to change all this? How can they fight back?

Sam: Well, so I think the first thing that people really need to do is make sure to go out of their way to listen to the experiences of people with disabilities and people of color and people who are low income, because it's sometimes, you know, there are a lot of, as we discuss, there are a lot of challenges. [We have to] make sure that we're listening to people about what they're actually facing and then follow people's lead on what kinds of policies are going to really help at the federal level. I think we really need to be thinking about the EACH Act, which would repeal the Hyde amendment and the Women's Health Protection Act, which would help guard against bans and restrictions on abortion care. Congress needs to pass the Home and Community Based Services Access Act, which ensures that all people with disabilities have access to long term services and supports. And that includes transportation and assistance with scheduling and attending medical appointments. We need to ratify the convention on the rights of people with disabilities, which reaffirms the human rights and freedoms that people with disabilities must have access to. And that includes the right to self-determination and the right to make decisions about family life. Policy makers also need to repeal religious refusal laws and regulations that enable healthcare providers and others to deny people access to reproductive care, including contraceptive care. And finally, we want to support legislation to promote supported decision making as an alternative to guardianship. As we discussed, guardianship has a lot of negative effects on people's reproductive autonomy, and several states have passed laws, recognizing supported decision making. We'd like to see legislation around this at a federal level as well. Some offices for example, are interested in potentially grant programs that would help promote supportive decision making.

Jennie: It's so great to see. There are so many things like in progress, right? Like there are already bills out there to make these things a reality. And so it's so great to see things that we can support to make sure that people are able to make decisions.

Sam: And I, I think people should also think about what they can do at a local level. Over the years, we have seen a few different bills that address decisions around abortion care that concern either minors or people with disabilities. And some of those bills have been pretty awful. You know, so one bill in Louisiana would have made it illegal to perform an abortion on anyone who under Louisiana's form of guardianship that, you know, I think their, their argument was that it would, you know, they wanted to prevent forced abortions when a guardian was forcing a person to get an abortion. But a lot of people under guardianship want abortions. Even abortion for medical reasons. And that wasn't addressed in the bill. Unfortunately, they, there was a pretty significant outcry among disability advocates and the sponsor withdrew the bill. So people should be paying attention to what's going on in their state as well.

Jennie: I think that's so important that we focus on the local level and state level, because that is where you see so much of the legislation happening that is having these impacts. And so much of the focus ends up at the national level that it's easy to miss some things that are gonna have really big impacts on people in the states.

Sam: Exactly. Finally, I think it's important for us to be talking about the places where reproductive rights, activists and disability rights activists need to be talking to each other. And another example of that is abortion bans that will ban abortion that are motivated by disability of fetus. A lot of the time, the sponsors of those bills are promoting them as supposedly, you know, disability rights bill as being about fighting disability-based discrimination. And we see sometimes people in the disability rights community thinking that that that's the case and, and thinking, “oh, maybe this is about fighting discrimination. Maybe I'm in favor of this”, but we really wanna make sure that people with disabilities understand how these types of bills can really harm, especially people with disabilities who are pregnant. And we also wanna make sure that reproductive rights activists are messaging around these bills in a way that doesn't reinforce the perception of, you know, obviously someone would want to terminate a pregnancy when the fetus is disabled, or obviously this is, you know, so important specific to access abortion when someone is disabled and we don't wanna perpetuate ableist stereotypes, but we also wanna affirm the dignity of people with disabilities and the importance of autonomy of pregnant people.

Jennie: Yeah. That's so important because it, it's definitely designed to like try and split the community.

Sam: Exactly. Um, and sometimes it's effective, unfortunately, and it's really important that we all stand in this together.

Jennie: Mm-hmm well, again, Sam, thank you so much for being here. I really, really did enjoy talking to you about all of this.

Sam: It was great to be on.

Jennie: Okay. Y'all I hope you enjoyed my conversation with Sam. I had a great time talking to them. They did a great job talking about these really important issues. And I'm so glad that we were finally able to talk about disability, justice and reproductive health and rights on the podcast together, it's a really important topic and it was way overdue. So I'm sorry that it took so long for me to cover it, but I'm so happy that we were able to make it happen now.

Jennie: Thanks for listening everyone. And we'll see you on our next episode of RePROS Fight Back. For more information, including show notes from this episode and previous episodes, please visit our website at reprosfightback.com. You can also find us on Facebook and Twitter at RePROS Fight Back, or on Instagram at reprosfb. If you like our show, please help others find it by sharing it with your friends and subscribing, rating and reviewing us on iTunes. Thanks for listening.

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