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 infromation 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 was administered in a different way. A respectful and easier way with focus on integrity and autonomy.

Dear healthy people without disabilities, this is why I avoid you

It’s around five years ago that I fell ill in ME and during these years I’ve had experiences that I never thought I was going to have. One of these is how painful it is to interact with people without chronic illness or disabilities. This is a letter to all of you healthy people without disabilities that I’m hardly in touch with nowadays.

Dear friends, family and aquaintances outside of the chronic illness and disability world,

I know I hurt you when I don’t show up for gatherings, when I don’t want to talk on the phone and when I don’t always reply to your texts and emails. The main reason is that I can’t fit interacting with you in to my very limited life, and most social situations are inaccessible to me. I won’t apologize for that, because the inaccessibility is not my fault.

However, I want to explain something to you. My silence isn’t only because of lack of ability and accessibility, it also stems from the pain it causes me to interact with you. Everything in my life is affected by my disease and my disabilities but to you it seems like I’m supposed to be the same person, just in a wheelchair. But you see, when you talk about what you think are causal, safe subjects, I’m reminded of how small my life has become. I don’t know if the winter was cold because I can’t go outside. I don’t know if I like the new ice cream at the beach café, because I can’t go to the beach and I can’t have ice cream. And I don’t know what I think about the new book from the author I used to love because I couldn’t focus enough to finish it.

When you try to show me that you care about me by saying that you hope I will get well soon so we can get together again, I’m reminded of that there are no good treatments for my disease and that you don’t seem to understand that at all.

When you ask me if I need help with something but demand that we talk on the phone in order for me to get that help from you, I’m reminded of that you don’t get that talking on the phone can make me so ill that I can’t be around my child that day.

Having ME means living in a parallel world, a world that is more bizarre than you can ever imagine. It means having a severe disease that most doctors choose to not know anything about, a disease with a huge stigma created by fraud ‘scientists’. It means not only fighting for my life everyday because of the disease, but also fighting due to the harm caused by fake science and healthcare professionals who believe I’m ill because of ‘false illness beliefs’.

I don’t expect you to understand this, but as long as you don’t respect what you don’t understand I can’t be around you. It’s too painful to be reminded of everything that was taken away from me.

Needing help for ME as autistic

I have recently been formally diagnosed with myalgic encephalomyelitis, ME. It has been suspected by several doctors for years but for various reasons it wasn’t until now that somebody had the courage to be clear about it. After a couple of years in the neverland, where I was considered an abnormality wherever I went in the healthcare system (even at the clinic I went to for my hypermobility/EDS), I’m now starting a process of getting actual adequate healthcare for ME. This means trying out some meds and getting help from an occupational therapist to make my everyday life easier.

I’ve only met with this OT once, but so far she seems good. Besides from a wheelchair and adjustments and equipment in my home, she brought up the question of applying for practical help with different things. It’s still unclear what I will qualify for and be able to afford, but I have to start consider practical help with cooking, cleaning and washing my hair. Basically because my partner can’t be both mine and our child’s assistant and work full time at the job that brings an income.

The thought of practical help is overwhelming. Partly because it’s going to be a lot of work to make it happen, but also because I have to accept that I’m ill. I have to trust a new person. I don’t know if I can trust someone enough to allow them in my home without it feeling like a violation of my integrity. Because my integrity has been systematically violated enough during the last couple of years in the healthcare system.

One of the most taxing things about this is me being a self-diagnosed autistic. Since I don’t have a formal diagnosis as autistic, it will be very hard to claim the right to adjustments to needs coming from my autism. I have a really hard time shifting focus. I really don’t have the mental capacity for too many social contacts, meaning that it will be a huge effort for me to have one more person in my life. I can’t have five different people coming into my home and into a very private sphere. A person that is supposed to help me cannot make polite smalltalk to me, because that steals too much energy from me since I find it stressful. I need help with somebody folding laundry and putting it in my closet, but it’s very important they put it in order. I’m picky about food, partly from my ME (some symptoms gets worse from certain food) and partly because I have a high sensitivity to textures and smells. The only reason I’m not underweight is because I’ve stopped trying to eat things that simply feels disgusting, which puts me an a limited diet.

As an autistic, there are things in how I communicate that needs to be taken into consideration in order to get practical help to work, and not stress me out. But in the healthcare system, I’m not open about being autstic and I don’t know how this will work out.