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.

My Daily Living Skills and Major Medical Issues

So, I ended up going to the ER in an ambulance New Year’s Day. Don’t worry too much though, I just have pneumonia and bronchitis.  Turns out that my body was in pain because my fibro was picking up on the impending illness. I went to sleep Thursday night and woke up Saturday  dehydrated and very ill. I didn’t have any minutes on my trak phone, and was alone at my sister’s. When for a number of reasons I couldn’t rehydrate myself properly by Sunday afternoon, I called the only number it would let me call: 911.

Don’t worry, it all came out okay. They gave me some medications and an in hospital breathing treatment, and since I had mentioned being Autistic when they brought me in the ER doctor made sure that the information he gave me was in easily processed chunks. Also, I was able to get myself in in time before it became a life or death issue.

This isn’t the first major medical issue I’ve had. It may be the first ambulance ride one, but some of my others- ones more directly tied to my ADLS deficits- probably should have included such a ride. Which is part of why I’m writing this post, actually.

The other reason: I’ve seen a number of people have their ability to live independently or not assumed based on things that have little actual effect on living independently. Being non-verbal vs verbal is one of my favorite irrelevant “indicators” of independent living. It has little practical impact when one has an AAC devices that is suitable for them outside of people’s prejudices.  I think other advocates have their own favorites.

I’ve tried living independently with minimal supports before, and it didn’t work. Because of my relatively irrelevant skills, some people assume upon meeting me that I’m someone who can live independently without extensive supports. They are incorrect, and I have the medical records to prove it. I’m not talking about assessments- I’m talking about the consequences, medically, of ignoring my support needs and Adult Daily Living Skills (ADLS) deficits.

The first time, I was trying to attend college. Because of other un-supported needs around the paperwork, I was having to live off campus. So I was on my own for the first time. I was in the nearest place I could find on short notice, in a tiny 2 bedroom house in a bad neighborhood in Erie, PA. After about two months, I had a man move in with me from back home who I was seeing. He had his own difficulties with executive functioning due to his ADHD.

In any case, I seemed to be doing okay. But there were little basic things that people would label as “minor” deficits. Not knowing how often to thoroughly clean the bathroom or kitchen, not being sure what needs cleaned. We weren’t living in a visual squalor or anything- but I couldn’t tell how to deal with or when to deal with things beyond picking things up and doing dishes.

In December, shortly before finals, I started to feel sick a lot. I’ve had GI issues most of my life- which I’m now finding are partially because of unidentified “mild” lactose intolerance- so I thought it was a part of that. The weekend before finals, I was miserable. The only non-graphic way to say it is to say I had constant diarrhea and severe abdominal pain. But that doesn’t even sound accurate, having lived through it. I’ve posted a graphic description on tumblr that you can read if you like. But I still thought nothing significant was wrong.

As you can guess, I have difficulty identifying my own bodily wellness. While I can observe things, they are relatively meaningless unless I’m specifically looking for them. I cannot register the contexts as they are happening- which is part of the reason why my lactose intolerance has been un identified until age 24 even with lifelong GI distress. I also struggle to figure out if my experiences are normal or if they are something to ask the doctor about- my fibro myalgia, for example, is pretty bad and has been symptomatic since I was 15, but I didn’t realize that the level of pain I was living with was abnormal until my 20s. (It increased dramatically at this point, which caused my mother who also has the diagnosis to ask questions.)

Sunday night I got to the point of being delirious. Not having much money, though, I refused to take an ambulance. The man who lived with me called around and found someone- a person I had gone to high school with who was attending the university- who was willing to drive me to a hospital. They did, and I didn’t even have to sit down in the ER before they took me back. It turned out I had gotten to the point of being in mortal danger- from C-Diff.

Most people pick up the bacteria in a hospital, and have it overrun their systems when they are on anti-biotics. I was not on anti-biotics, and hadn’t been to the doctor in a while. Additionally, I was on no other medication at the time either. The closest we can guess is that my difficulty with “higher level” cleaning and sanitation was a contributing factor.

Another major medical incident involved another time where I was living primarily on my own. I contracted MRSA, and had it not been for my brother deciding that it looked like it needed to be looked at, it could have been much worse than it was. As it was, I ended up with a very large infection on my lower abdominal area. If I weren’t so overweight, it would have eaten through my abdominal muscles. Instead, it ate fat.

The long q-tip the ER doctor used to get a sample deep inside went in more than half way without touching bottom. It was rather disgusting. I ended up basically having a hole 2 or 3 inches deep in my side, which I had to cover with bandages which were considered highly bio-hazardous when I changed them every day. Today, I have a scar on my side that is dark-ish purple.

Again, I had none of the common risk factors associated with community-based infection.

In my case, both of these were at least partially caused by complications of insufficiently supported ADLS deficits. I have had a number of other, more minor health consequences as well, but these are the more serious ones. I’ve had non-medical consequences as well, but those are not the subject of this post.

The point is that my relatively less intense ADLS deficits were still a major factor in my health becoming endangered. It wasn’t my major issues organizing and managing money or bills, nor was it my issues managing people, that put me in danger. It was the parts that people brush off- difficulty judging my own health, and of judging what is normal and “appropriate” actions, of managing and knowing when to do some of the basics.

And I’ve no idea if any of this is making any sense. I feel a bit as though the thoughts aren’t done being put into words yet. Maybe I’ll revisit it again at some point? I’m not sure. I just know I was thinking about it a lot while I was in the ER this past weekend. So. . . there’s that.