“When people think they are fundamentally broken, it affects their freedom to choose.” -Mama Be Good
Content: ableism, internalized ableism, mention of hospitalization and depression, mention of denials of reproductive justice to people with disabilities.
When I was 20, I did not love myself.
I was tired. I had been in and out of hospitals, been under the care of providers hopeful that a pill would fix my brain. I had been told repeatedly that there was something “wrong” with me. That there were some things it wasn’t “right” for me to do.
I had moved back home, having had my stint trying to be what I thought an “adult” was fail. A lot of my plans had failed; I’d been so unsuccessful at maintaining a home that I became deathly ill; I hadn’t sought out the support I needed at college, and had to drop out for lack of funds; and I couldn’t get a job. I saw myself as incapable of even killing myself, and so I went to the hospital again. Case management was better this time than they had been in the past. They were involved, and we worked on a self-care plan.
“What about having kids some day?”
I told her I didn’t think I would. I feared. I feared that I’d be as incapable as some people assume about people like me. I feared that I’d be stuck in a cycle of hospitalizations and that having a kid would mean they would lose their mother every two years. I feared that I wouldn’t know how to get support. I certainly didn’t know then what my needs were well enough to articulate them. I didn’t even have a strong enough concept of disability to think of it in terms of supports. I just feared, and I hated myself, and I pushed both of those feelings away by ruling out the possibility. I told her no, and refused to engage in that discussion.
People like me aren’t just told these things. Some of us, like the poor and People of Color, are or were forcefully or coercively sterilized in procedures we didn’t entirely consent to. Some of us were denied even the knowledge that we had something to consent to. Some of us were coerced and denied a valid choice.
People like me are lied to about our health and about our ability. We have our lives reduced to a gene, to things not to want our kids to inherit. We are told that having or keeping our own kids is by definition abuse. We are even sometimes ordered to go directly against our choices, or threatened to make certain choices. Our attempts to speak back are often co-opted by groups we may or (as in my case) may not believe in. The idea that we might even be sexually active in a way that might lead to us being parents is seen as remote.
To be clear: I know plenty of people who have chosen not to have kids. They made a choice to be child-free of their own free will. It’s fine if they stick to it, and it’s fine if they don’t.
I don’t consider my choices I made about kids when I was 20 to have been of my own free will. My responses were societally coerced. I had so much self hate, self doubt, and fear that I didn’t feel like I even had a realistic choice. I thought that the choices open to me were to abort or put a child up for adoption. I had been told for so long that someone like me would by default be a bad or incapable parent. So I felt like I had to reject the very idea of having kids when it was offered as a part of my future.
Around this time, I became more active in disability rights work. I’d been doing advocacy since I was very young, but hadn’t connected with the larger disability rights movement. I started writing and believing in disability rights, coming to identify as a person with disabilities rather than hiding them where possible. I even, at one point, had a friendship end because the other person kept arguing that people with intellectual and/or developmental disabilities who need supports shouldn’t be having kids. I believed that People with Disabilities had a right to kids.
I just didn’t believe in them for myself. I had spent too long in choices dictated by fear and internalized ableism and uprooting that is a long process that never seems to be over.
About five years ago, my younger sister found out she was pregnant. She was 16, and it wasn’t intentional. She was presented with her options – I know, as I was one of the people who went over them with her – and she chose to carry and keep her child. I won’t go into too many details about her pregnancy other than to note that yes, the hormones that come with pregnancy interacted with her disability (she has a Traumatic Brain Injury). But she made it through, and the actual birth was relatively easy. My niece was born, and she is gorgeous.
My sister has had the support of our parents and other family members in the four years and almost three months since my niece was born. I watched (and helped be a part of) the supports that she needs to be a successful parent. During this time, I became less and less afraid to ask for supports and accommodation, and slowly gained the words I needed to communicate and define what my needs were. I also was becoming aware of the “wants” that I had been avoiding thinking about because they didn’t seem reasonable.
I realized that I would like, someday, to raise a child. I began to think about what I would need to have in place to be the sort of parent that I want to be.
There are some problems, though, that I’m more worried about than others. I have some reproductive health issues that sometimes, but not always, result in infertility. It is treated through a combination of medications that includes Hormonal Birth Control. The reason, in fact, that I’m not currently passed out in my shower or vomiting in pain due to this condition is because of those pills. It raises questions, both about how I’d be able to handle and treat my health conditions when trying to have a child, and if I’d be able to birth the child my self. I’d like to, but if I’m not there are other issues involved.
Fertility treatments can be harder to get when you are disabled. While it is against the law for a healthcare provider to reject someone on the basis of disability, this type of provider can reject someone for personal reasons. The Office of Technology Assessment of Congress did a survey of artificial insemination providers, which is one of several options in infertility treatment. They found that a large percentage screen for psychological, developmental, and chronic health issues when doing tests to decide on treatment recommendations. For example, 79% screen against hypothetical patients with serious genetic disorders. Another study found high rates of doctors deciding against treatment for or rejecting hypothetical patients with various disabilities, including past suicide attempts (around 40% answered likely to turn this group away) and bipolar disorder (34%). Adoption, too, is more difficult.
And this is just in the seeking to have children portion of things. Even if my health issues have not impacted my ability to have children, biases against parents with disabilities result in higher inappropriate removal rates, unfounded reports, and evaluations that are not built to accommodate the adaptations that a parent with disabilities may have established. The Family Law system is simply not designed in a way that accommodates people with disabilities. (Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children from the NCD has several chapters on these issues.)
I continue to think about supports, as well as the sort of environment I’d want to raise children in. I know that I’d need a partner dedicated to the family we would build. I’m good with kids, even babies, but I do need times when I have breaks to restore my stress, anxiety, and frustration levels. An involved partner would help with this. I might need alarms and reminders, but these are things that are on the market for any parent. I personally want to raise my child in a Jewish home, with a Jewish co-parent. And, of course, for our family to be one that is highly pro-disability rights.
I want to have children. I want to raise children. Even though I’m frightened. Even though people will challenge if it’s a right I, and people like me, should have. Even if it’s not going to happen for a while. Even though it will mean needing different supports than I need right now. It doesn’t negate the fact that I’m pro-choice any more than it would for any other person wanting to become a parent. To me, it is about choice – about choosing the option that is right for me, myself, rather than having my choices about my body and my life made by someone else.
This is a choice that I’m wanting to make and someday follow through on – and finally, it’s of my own free will.
Advocate, Writer, Geek.
Multiply Disabled, Queer, and proudly Autistic.
Primary Obsession: Institutions, History of Care of people with MH/DDs
Also obsessed with: Social Justice, Cats, Victorian Romanticism, and Doctor Who.
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