It Goes All Ways

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.

Psych Meds and Me

Today, I received a phone call from the office of my Primary Care Physician (some might prefer “general Practitioner”). They asked me if I had an appointment with my psych doctor- yes- and then unleashed some horrific news on me. My insurance- Medicaid/the PA Access card- was turning down paying for my Cymbalta and they thought I should talk to the psych doctor about another medication.

For another person, this might just be poor news. For me, this is horrifying news. Earth shattering, maybe I should just kill myself now and get it over with news. You see, there’s a reason why It’s hard to get me to take certain medications. I was part of the generation of over medicated, pre-teen guinea pigs.

The earliest I remember taking Psych meds Was 4th grade, but it’s possible that I was put on them before that and I don’t remember because we did a lot of herbal medicine (Echinacea, St. John’s Wort, Tea Tree Oil, etc.) when I was younger. (My mom still does herbalism- and Comphrey Salve is amazing.) From then until I turned 14, it was nearly a new med every 2 or 3 months.

On one med they put me on when I was 12, I gained 60lbs in three months. Around the same age, I started having random pain for no reason which I thought was from the weight gain alone. After all, my mother’s second husband was always telling me how horrible being whatever I was was, and that if I hurt that was the reason. Now, over 10 years later, the pain that I brushed aside as being my fault because of my weight has been identified as Fibro myalgia. I have tics that I don’t remember having before those days, though I never mentioned them to anyone and my mother thought they must be voluntary. I was in placements that gave kids Seroquel in order to make putting a ward of emotionally distressed kids to bed easier. I was subjected to any number of medications whose use in minors had not been tested, or at least had not been published.
(I should post another time about the effect of yelling at someone and telling them they are faking does to someone long term. I’ve had it result in not getting even medical treatment until the last minute. Only so many times when you are called a malingerer before you start to believe it.)
When I was 14, I quit taking my medication, and did fairly well- my mother had left her second husband, I had a supportive psychiatrist, and a mom who was into lifestyle management. For several years, I struggled and faught so that I wouldn’t have to be put back on them. I was successful until I had a mental breakdown when I was 18 (My first adult hospitalization; there were 3 in total), when I was on something for a couple of months, again when a year later I was housebound, and again for brief periods during another two hospitalizations. Each time, despite my pleas that it was my anxiety that was the issue, not my depression, I was put on medication designed to treat depression or Mania. Each time, they were failures.
When I lost my insurance, I went a while without medication, and things were bad. I was too anxious to do much of anything by myself. Finally, this fall, I got Medicaid and my mother suggested Fibromyalgia and anxiety to my PCP, and they sent me home with a sample of Cymbalta. While I was anxious about being back on medication, This new medication was different. The parts of myself that I love weren’t blunted, but my General, non-triggered anxiety and the near constant nerve pain was gone. It really was like a magic pill, or the end of a long, hard journey. And one of my worse fears became that they would tell me that I had to stop taking the first thing that had actually worked.
So when the administrative employees at the office that was bought out when my PCP (who I’d had since 4th grade) moved to teach at Duke called, I freaked. I tried to explain that this was it, there was nothing else for me to do, and I was NOT going back through the Hell that had destroyed me as a child. That there had to be something. . . But the employee was horrible, unsympathetic, and insistent that I would have to do the guessing game again. I hung up on her.
At first I tried calling my best friend, but his phone was off. *peers archly in his direction* I tried my mother, but only got her answering machine- where I left a surely unintelligible message between sobs. I turned on glee and tried to watch it, but I barely remember it. One of my cats- Tribble Magoo- came over to me, leaned against me, and started purring at me in an effeort to calm me.
Eventually I called Ms. Janet, my neighbor. Explaining who exactly Janet is is a long story, but she’s in short a family friend with experience with disability issues. Between fits of sobbing, I explained what had happened. She was FURIOUS. you see, in cases like mine where other options have been exhausted, Cymbalta will e paid for as a medical necessity under Medicaid- but only when the doctor does their due diligence.
Now, the new people at the office have lost sight of folks as people, and the new owner really does treat people like case numbers (they also lost my whole family’s medical records dating back to 1996) and a hassle. There’s only one person there who actually listened to me but the amount of power he holds in that practice is limited. In short, that they have become like this is both horrifying and makes the failure to fight for my needs almost expected.
Tomorrow, Janet and I will be finding me a new doctor, and I will be writing a letter to my old practice informing them EXACTLY why I am leaving.
Sadly, there are people who don’t have family and friends to fight for them. Even though I have a lot of change that I am scared of, and lots of tears to go yet, at least I have supportive friends and family.