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 somethings 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 for lack of funds; and I couldn’t get a job. I saw myself as incapable enough that I wouldn’t be able to kill myself, and 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 so. I feared. I feared that I’d be 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 want to consent to. Some of us were denied even the knowledge that we had something to consent to. Some of us are coerced with them, denied a valid choice. We are lied to about our health, 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 with those orders. 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 even 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 when I was 20 about kids 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 had internalized 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 parent, or an incapable one. 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 these rights.
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 5 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 Traumatic Brain Injury). But she made it through, and the actual birth was relatively easy. My niece was born, and was and is gorgeous.
My sister has had the support of our parents and other family members in the 4 years, almost 3 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 gaining the words to communicate and to 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/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 where 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 more an more 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.
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I don’t really talk about my mother on here too terribly much- though if you talk to me on facebook or twitter or any of the “social” media I do- especially in comparison to talking about her ex, aka Rick aka her second husband. But there’s a reason for that- because she for her part did well with me. I’m not saying she’s perfect- she does indeed struggle with some of the attitudes that she’s internalized about abilities and supports- but she was still amazing.
Last fall, my posts about intent, and about how the parent movement tends to erase or drown out Autistics, had one person remark that I was arguing that parents are a part of the problem. Actually, I think it was “are the problem” but . . . yeah. I don’t think parents are the problem so much as that their voices and ideas are too often prioritized of that of the PwD that they are parents to. Indeed, I recently attended a rally full or parents with great intentions- intentions of undoing the cuts to services in my state. But they felt it was okay for them to over talk the time limits when self advocates didn’t, to use patronizing language about their adult children, and to erase the efforts of self advocates with Developmental and Intellectual disabilities around some of the laws that protect our rights. Really it’s a perfect example of what the problem is- that we live in a society where these things are considered okay. But I digress.
History
My mother worked pretty hard at advocating for me in school as a kid. She even got heavily involved in advocacy around service provision, as the county tried to say that I would need shipped to a residential facility (which is an institution for youth, essentially) to have my needs met. My mother worked super hard to keep me at home and in school, even when we were being told that even graduating high school might be a “pipe dream.” (Hint: I’m the only one of my siblings to have graduated HS. My brother has a GED, and my sister is still working on passing the GED.)
She also, during the time that my behaviors were the most difficult until she married her third husband, was the primary wage earner in our household.
But beyond all this, she instilled some of the basic principles that have gotten me to where I am. She respected my wishes and goals about school, and later on- around age 14- about medication. She encouraged me to be involved in advocacy, including asking me to be on my first panel at age 12. But beyond that, she taught me a bit about how it is our civic duty to work for what is just.
Current
Now she has her own needs disability wise. She can’t do the driving she used to without being in extensive pain. She has to do a lot of self care to stay off of medications. While she supports when and where she can, she actually isn’t able to do as much as she used to. And that is fine- it has to be, if we are living the sort of life that matches what we believe about access and self care and love.
We are relearning what it means to support each other as our needs change and grow. I’ve had my skills and abilities vary greatly in the past 7 years. I can actually articulate the things that happened to me better, and as a result my mother is learning more and more about what happened when she wasn’t there, and what I’ve tried to communicate but couldn’t in the past.
At the same time, though, I’m not as easily verbal as I was. It takes more effort to say things verbally, even though I have more words and a better grasp for them now. While I don’t pretend I have nothing to say to avoid letting people know Words drop out on me, they do drop out more often. (We think this is because of the amount of stress I’ve been under with housing). I also have had my anxiety around phone use spike.
When I was little, I pantomimed what I wanted when the words couldn’t come, and she thought it was a game I played. Now she knows, and I’ve had a chance to explain that it was never a game on my side. As I got older, if I couldn’t verbalize what I wanted I pretended that I didn’t want or need. Now, I can send her a message on facebook at any time, and she will respond no matter where I am- across the country or across the room.
Over the past year, my relationship with my mother has shifted around, become more complex on some levels and yet simpler on others. Simpler, because we now both know that the standards for communication out in “normal” land aren’t suitable. Complicated, because her roles have changed along side her needs. And while her role shift went smoothly on me being my own advocate, being able to balance asking her for help with respecting her own needs as a PwDs isn’t smooth at all.
In example
When I contact my mom over facebook, for a long time I had to initiate. And then one day, from across the room, she sent me a message asking me a question. It wasn’t a complicated one, it didn’t need an elaborate explaination or links to make sense. Indeed, it was something mundane. But the fact that she was willing to ask it in what is essentially “my” lanuage instead of hers and waiting for an answer? That was pretty amazing.
I love you mom. And not just for your kitten pictures.
I reached out to a number of bloggers to write about mothers, relationships with parents and parent figures of choice good *and* bad, and what it means to express familial (family) love as/with Autistic and Neurodiverse people. I will post links later in the week, but this is both for our community and as a huge mother’s day gift.
I’d also like to remind everyone that it’s International Autism Acceptance Year (IAAY) April 2012-April 2013, and that all this year, various community members will be doing projects around it, thanks to the organizational skills of Paula Durbin-Westby.
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