Content: This post includes mentioning PTSD, vulnerability and harm done by paternalistic behavior and lack of respect.
My ME (Myalgic Encephalomyelitis) has become worse during the last year and I’m therefore applying for help with some everyday chores. The days when I’m not able to make myself a simple snack are becoming more and more frequent and my partner can’t take care of me as much as needed, because he has to take care of our kid and work.
Applying for more help has made me think a lot about what I need to make this help work and it’s clear to me that I need people to be very careful about respecting my boundaries. If somebody is going to help me, I need that person to make it their first priority to make sure they help me with what I communicate, in the way I need it to be done. This might sound so obvious that it’s redundant to state, but in my experience it isn’t.
During the last years so many people (healthcare professionals, my mom and people from my social insurance agency) have demonstrated that they don’t respect my boundaries at all, and I’m hurt by it. For some reason it seems to be a common misunderstanding that when you are helping a disabled person, you are automatically entitled to the person’s private information and to run the person’s life. It doesn’t matter if I tell people that their ‘help’ is actually just making life more difficult to me, just by claiming that they are trying to help me they seem to think that they are free to do whatever they feel like.
When I say that this paternalistic behavior has hurt me, I mean that it has done some serious harm. I’m scared of healthcare professionals. I have nightmares and I’m hypervigilant in most situations where I need help. A big part of my PTSD stems from situations where I’ve been a patient, a child or needed help in some other ways. Also, healthcare has made my ME more severe by harmful diagnostic procedures, tests, assessments and treatments and nobody is willing to take any responsibility for it. Healthcare professionals act like it’s my fault that I have such a weird disease that they refuse to learn anything about, and having EDS and being an undiagnosed autistic doesn’t exactly make me less weird to other people.
When I think about how I could make receiving help work (and not just worsen my ME and PTSD), I think about how I need to have autonomy. How I need to be in charge and by getting practical help I become a subject that cares for myself. I don’t want to be taken care of, I just need people to practically do what I can’t do. I need my knowledge about myself to be respected. I need to be seen as the expert. Given the background I just accounted for, these needs (that are a lot about restoring my integrity and sense of humanity) make a lot of sense to me.
Then, every evening as night falls and I’m waiting to fall asleep, something else surfaces. I stop thinking about practical solutions, and I’m too mentally exhausted to think one more analytical thought. Then I’m just longing and hurting. I’m too exhausted to defend myself against people who are not respecting me. I’m ashamed to write this but then I want to be protected. I long so hard for someone to comfort me, and it feels so totally impossible to ever allow it again. My deepest, most shameful desire isn’t sexual – it’s about feeling safe enough to allow myself to be vulnerable in somebody else’s presence.
Initially, these desires seemed contradictory. Daytime I fight to defend myself and avoid situations that make me vulnerable to other people’s harm. At night, all I wish for is to be able to be vulnerable again. However, these aren’t contradictory needs. It hit me last night that being deprived of things like integrity, respect and a fundamental sense of safety means I was also deprived of the privilege of trusting people. Longing for autonomy and longing for vulnerability isn’t two different things, it’s two different sides of the same need: safety.
As you grow up, I want you to learn that there are people who respect your bodily integrity. This means that we make an effort to understand your boundaries, and because of that we will have a better chance of truly respecting them. I will never force you to, or reward you for looking me in the eyes or hugging me. I will set an example by not hugging people when I don’t feel like it. I hope that this will teach you that when you encounter somebody who doesn’t respect your boundaries, you will be able to understand that there is an option and you can say no to having this person in your life.
Dear parents of autistic children, we need to have a talk about why it can be so hard to be a parent of an autistic kid.
A couple of days ago I tweeted saying that parents should stop blaming their autistic kids for everything that’s hard in their lives, and somebody responded saying that navigating services for disabled children is a nightmare. Since I’m not only autistic and disabled by a neurological disease myself, but also have an autistic kid, I know this very well. Because no, it’s not enough that most services offered are useless, me and my partner are expected to run to a hell of o lot of meetings to get information about certain services. It’s the same information over and over, about services that are of no use to us, but they work as gatekeeping to other kinds of services (the latest is that we’re applying for services for me, because of worsening of my ME and that means that my partner has to go to one more meeting about services for my kid). As if it wasn’t enough that we have to spend so much time and energy on useless and inaccessible meetings, getting what we actually need seems almost impossible. My kid needs an accessible school, but that’s nobody’s responsibility. My kid needs accessible healthcare for his astma and hypermobile joints, but that’s really not a service that exists. I know very well that navigating services can be very demanding and frustraing.
But. That’s not because our child is autistic.
The reason for why navigating services is hell is because of an ableist society who has created a very ableist system of services for disabled people.
How services are organized differs between different countries which means that what I will describe here might not apply to all of you, but I will give you a couple of examples of how, where I live, services for disabled people are organized based on ableist ideas.
- Services are based on the idea that disabled people, especially autistic children, should aim at making them less deviant.
- Disabled people need to prove that we need the services we apply for, while people without disabilities have access to plenty of services that they get without having to prove their need for them. Because of ableist propaganda claiming that disabled people cheat a lot to get services we really don’t need, it’s seen as normal that service applicants have to exhaust ourselves and give up our integrity to apply for, and then maintain services.
- The application process for many kinds of services means a loss of integrity. A whole bunch of people will demand access to medical records, ask very personal questions that really have nothing to do with the service (sex life, genitals, toilet habits) and sometimes demand to inspect and scrutinize the service applicant in intimate situations such as showering, toilet visits etc.
- Bureaucracy isn’t well coordinated and different institutions are responsible for different kinds of services, and they don’t communicate with each other, meaning that service applicants have to repeat the same information many times and coordinate information between different institutions. This takes a lot of time and energy and usually means that a person without disabilities has to be involved in applying for and then implementing and maintaining services.
- A lot of autism experts and other people who claim to work for autistic (and other disabled people) defend this system, basically telling autistic people that we lack judgement when we protest against this system.
This system makes it very hard to be disabled and care for a disabled child, but it doesn’t have to be like this. The fact that this is what it means navigating services is a consequence of political decisions. Ableist decisions. Because if disabled people weren’t seen as cheaters and burdens with less value that non-disabled people, we could organize a more accessible society where services were administered in a different way. A respectful and easier way with focus on integrity and autonomy.
Over the last years, I’ve realized that I communicate and interpret things more literally than what a lot of people do. As long as I communicate with other people who do the same it works just fine, but communication with the rest of the world is a tiresome project. It causes both stress and a lot of practical problems, and in this post I’m going to explain what it means.
As an autistic person who also is chronically ill and suffers from a lot of brainfog, I need predictability for a number of reasons. I need to know what’s happening in advance to be able to plan what to spend my energy on, I need to have time to prepare and I need time to adjust my focus. When I interact with somebody who doesn’t make as literal interpretations as I do, I never know what to expect. If we make an agreement about something, I can often assume that we haven’t understood each other but no matter how hard I try to predict what the other person will do or expect, I fail most of the times. This means that I spend energy, way too much energy, on trying to figure out how people interpret what I communicate. I don’t have a lot of energy because I have a disease that literally means that my cells can’t produce as much energy as they can in a healthy person (ME – Myalgic Encephalomyelitis). To this, the lack of predictability causes stress and on top of that, misunderstanding tend to lead to people being angry or disappointed, or pushing me into something that will worsen my condition.
To conclude, interacting with people with a less literal interpretation causes me stress because it consumes energy, I don’t get necessarily predictability and I have to deal with other people’s anger and disappointment.
Practical problems occur mainly because I’m very inflexible due to my lack of health and energy, and because I have a hard time shifting focus. I have to prepare immensely for every single little task, and when somebody suddenly expects something from me that I haven’t prepared for, I can’t adapt as quickly as expected. At least not without worsening my symptoms.
This becomes very obvious in situations where somebody is helping me with something, because when I ask someone to help me I mean that I need help with exactly what I asked for. Nothing more, nothing else. For some reason a lot of people think that they can do way more, or help me in a different way than what I asked for. For instance, let’s say that I ask someone to buy me a bottle of milk. The person says yes but comes home with three bags full of groceries. The person expects me to be grateful, and when I explain that I don’t have room to store all those groceries, the helping person will be disappointed. The person has just caused me a practical problem that I probably don’t have spoons to deal with, and on top of that I have to spend my precious energy on explaining why and deal with the other person’s feelings.
On top of causing me all this stress and practical problems, doing a lot more or something different than what I asked for seems to me like thinking that you know my needs better than I do. I lose my autonomy and have to spend energy that I don’t really have on dealing with practical problems and stress.