What We Do

A while ago I wrote a post about how I tend to feel like a bad parent, mostly because of the disease that makes me unable to to a lot of parenting stuff. Since then I have thought a lot about it and realize that even though I don’t do a lot of the stuff that I think of as parenting, I do other things with and for my kid. To help my memory along the next time I feel like an absent parent, I’m going ot publish a list of some of the things we do together.

So, here it goes.

  • We chill in my bed with an iPad/phone/computer each, headphones on and indulge in our interests. Every now and then my kid interrupts me to show something he has written or a picture he’s been drawing.
  • I tuck my kid in at night. Put on his duvet, make sure all toes are covered (a ritual that he loves). Then we say good night in three languages.
  • We look at pictures and movies, both from when he was younger and more recent ones. He’s learning how to search among pictures and movies using keywords on my computer and loves it.
  • We write. My kid writes short stories on his ipad (or sometimes on a computer) and I write my stuff. Recently he started to care about spelling so now he’s asking me how different words are spelled and I have to try to explain different spelling rules in English and our first language.
  • I create visual supports of different kinds, and my kid is always involved in this. He gives me input by telling me how he understands pictures for instance, so I can create schedules, instructions and illustrations of different kinds that help him.
  • We make illustrated stories about things that are going to happen, things that have happened and things that my kid wishes for. We use a special app where we combine drawing, pictures, text and record talk.
  • We read together. The more severe my ME has become, the harder it is for me to read out loud but sometimes I read to him, other times he reads to me.
  • Stim. We color stim by blending colors in my drawing app (SketchBook), and look at things with nice, deep colors.
A red infinity symbol with traces of blue, yellow, green, pink and purple. The background is light blue with a hint of green. The picture is painted to look almost like clouds.

 

This list is by no means exhaustive and as a parent I do a lot of things that are more boring and not obvious to my kid, like planning different things with my partner, preparing for different events, arranged an assessment of my kid’s hypermobility and so on. But the list above is a good reminder of that I actually do spend time with my kid and I am his parent.

My way of parenting doesn’t fit the idea I have of what parenting should be, and it makes me doubt myself as a parent, but I need to remind myself that I do what I can considering being quite severley ill in ME, bedbound and housebound. I don’t parent in a conventional way, but I can give my kid something that I didn’t get: Space to explore and be his autistic self.

Let Me Decide If It’s Worth It

As a person with a bunch of chronic conditions I’m sometimes told by so-called experts that I should do fun and meaningful things, even if it leads to a worsening a symptoms. This is especially common among healthcare professionals who work with people with chronic pain. People who advocate this approach to dealing with chronic pain seem to think that the positive outcome of doing something meaningful will be greater than the pain, and that will make it worth it. Avoiding things that trigger more pain is called avoidance or fear and is for some reason always considered irrational.

I wonder how much damage this idea has done to me. Even though I have never really believed it, it has affected me. It has made me think that there is some piece of truth in it. It has made me harm myself.

Yesterday I met with a friend and her kid. It’s the first time in a year that we have met. Actually, it’s the first time in a year that I’ve met with any friend away from keyboard. The circumstances were made to be as gentle to me as possible: I took breaks and rested, my partner did all cooking and practical stuff, we were outside in the garden to keep the noise level with two kids down. We had a great time. Still, I feel so bad today. My tachycardia is worse, fever is up, pain is increased. My sensitivity to light, noise, movement and moving visual impressions is horrible. I can’t brush my teeth because my muscles are too weak and sore to hold my electrical toothbrush. I can’t be in the same room as my kid. I can’t be outside. I’m isolated in a bedroom with curtains down, needing help with almost everything but can’t tolerate to have people around me.

I had a great time yesterday, but was it worth it?

No. It wasn’t worth it. It wasn’t worth this.

I knew I was going to pay for seeing my friend and her kid, but I thought it was going to be worth it. I don’t know exactly how I was thinking, because I knew I was going to pay by feeling like I am today. There’s no surprise going on here. So why did I think it was going to be worth it?

Because a part of me still can’t let go of the ideas planted in my head by healthcare professionals who have no clue about how bad many symptoms get when I exert myself. I know they are wrong but I want to believe it. I want to believe it because I don’t want to have reached the point where I only see my kid, partner and healthcare professionals AFK. But it seems like I have.

How does it come that so many healthcare professionals seem to think that their job is to make people accept our situations by over-estimating our capacity and pushing ourselves, instead of learning to truely accept the limitations we actually live with? How does it come that these people, who brain-washed me into thinking that harming myself is a good thing, never have to take any responsability?

I know the answers to these questions. I just have a hard time believing that it’s true.

 

(Update: With ME the thing where healthcare professionals push us to over exert ourselves is especially bad because we don’t always recover, we risk permanent harm. I’m well aware of this but just realized that I don’t make it clear in the post.)

The Emotional Harm of Unhelpful Help

Content: This post contains explicit descriptions of situations of harm done by people who are supposed to help. It refers to feelings of fear, vulnerability and unsafety.

 

I’ve been approved for a service where I will get help with some household stuff. Mostly it’s to get breakfast done for me, and a certain amount of tidying, cooking and cleaning, but also to get help with schampooing my hair. At first it was a nice surprise that I was approved for this, but now I’m feeling really bad about it. I can’t imagine how I will ever make this work without me being harmed in one way or the other.

Thinking about how a stranger (or strangers) will enter my home makes me feel like the world is imploding. It’s a specific sense of disaster that I really can’t describe more precise than that it creates an intense fear that feels like reliving all those times people who I’ve been depending on have harmed and hurt me. I relive all those times in one second, with all fear, pain and vulnerability enhanced to a level that I don’t have any mathematical expression for. Because it isn’t only the sum of all fear and pain, it transforms into something else. To an unwanted insight of how unsafe I am in this world. Letting people into my home to help me means giving people the power to harm me again. So far my experience says that this is what will happen. Because when people don’t understand what I need, they harm me in at least two different ways.

The first kind of harm is the practical harm. If I need help with getting something to eat and you give me something that I’m allergic to, you harm me. This is usually fairly easy for people to grasp, but it happens a lot anyway. However, when I need help from a doctor with a medical problem, and the doctor fails to recognize and understand how I respond to meds due to having ME and therefore prescribes meds that lead to permanent harm, it’s usually not recognized. When I need help with special transportation (transportation that allows me to lie down) and the driver keeps talking and therefore creates unnecessary brainfog, it’s usually not admitted to be harm. When the person who is supposed to help me out by cleaning my home creates extra work with coordination and therefore steals precious energy and makes me exert myself more than what I should and I therefore end up with a worsening of symptoms, it’s usually not considered harm.

The other kind of harm is the emotional harm that the practical harm leads to. When I need help with food, cleaning and other household stuff but the person helping me is blaming me for having such unrelatable needs, such as only certain hours of the day, limited talking, only certain food, keep the curtains covering the window and what not, I feel unrelatable. Like my needs aren’t real needs, like I chose them. Like I could get rid of my needs if I only made an effort. It hurts because I’ve frequently been blamed for being such a demanding and difficult patient and person. When I’ve been practically harmed I’ve most of the times not received any apology, but instead been further blamed for the pain someone else has caused me. That makes me scared, because to me that’s like saying that harming me is justified by me being so difficult. It means it will happen again.

The harm that I’ve been subjected to so many times by people who were supposed to help me has made me a very suspicious and scared person. Letting a new person into my home to help me feels like inviting an abuser into my home to attack me.

 

A Weak, Valuable Body

The result from image searching “inspiration porn”. 22 pictures, 13 of them are of visibly disabled people who are performing physical activities. Click on the image to go to the search result from Google.

There are so many reasons for why I strongly dislike inspiration porn (it dehumanizes disabled people, it’s used as an excuse to not make contexts and places accessible and it’s used to maintain oppression of disabled people) and there are a number of people who have written and talked about why inspiration porn is a bad thing. However, there’s one aspect that I haven’t read very much about: How inspiration porn tends to value strong bodies more than weak bodies.

I’m talking about the kind of inspiration porn where there’s a picture of a disabled person doing something physically demanding, like climbing a mountain, boxing or running a marathon, with a comment stating something like “She didn’t let her blindness stop her, everything is possible!” or “If she can so can you. No excuses, just do it!”

This worshipping of physically demanding activities isn’t limited to inspiration porn, it’s everywhere. Physical activities, like exercising, are frequently presented as the solution to all sorts of health problems and sometimes it seems to be so holy that the most oppressive, paternalistic ideas are accepted as long as it’s in the name of promoting physical activities. As an interesting example, we have this thread on twitter with the message “Movement is medicine”.

Image of stairs and escalators in what looks like a metro station. The stairs are made to look like running lanes, accompanied with an image of a person running up the stairs. Click on the image to get to the twitter thread where it’s from.

However, when it’s combined with ableism in the shape of inspiration porn, it gets even more problematic. Why? Because it tells us that a weak body is a bad body. That a body that can’t perform physically, doesn’t have the same value as bodies that can. It tells us that disabled people can be valuable as long as we can manage to be physically active. If we’re physically active, we’re excused. Then we’re good disbled people. It becomes a moral aspect of who we are. It’s the same kind of idea promoted in the sentence “Teach your daughter to be proud of what her body can do, not what it looks like”. But what happens when people have bodies that can’t do that much? Are our bodies bad bodies?

My body is weak. It can’t perform. Physical activities make it weaker and make my disease more severe. My body can’t be pushed to obey. My legs can’t run anymore. For walking more than a few meters, I need support. I can only sit up straight for a few minutes. I’m physically weak. The message I get from everywhere I turn is that a weak body is a bad body, and that a physically inactive person is a bad person. I don’t agree with this message, but I get affected by it.

I think fat activism is great and I think that kind of activism is needed for ill bodies, weak bodies and disabled bodies too. Because by now I’ve been ill for several years and I don’t have much muscles left. My body doesn’t only feel weak, it looks weak and it’s starting to really get to me. The other day when I passed my mirror I realized that I’m starting to feel bad about how weak my body looks. This is a kind of internalized ableism and I don’t want it.

Navigating Services Is Hell Because of Ableism, Not Because of Autism

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 disabled 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.