Between Two Worlds

Grieving is a paradox. On one hand I feel numb, like I’m stuck in gray vacuum. On the other hand I’m overflowing with some kind of emotion. Maybe it’s sadness, maybe it’s something else in this as well as the the sorrow.

When I think about it, I guess there’s a bit of shame in this. I’m ashamed because the autistic world and the allistic world aren’t great at working together and I’m stuck in between them, blamed, ridiculed and belittled for my efforts to translate and convert logics between these worlds. For some reason, it’s always up to the people from the autistic world to explain and prove our needs to the allistic world and when I have explained myself into exhaustion, the allistic world usually doesn’t appreciate my efforts. I try to explain, illustrate and point at sources just to be told that my needs are just as unreasonable as my kid’s needs. They won’t be accommodated because of some made up policy that makes no sense at all more than that it fits allistic people.

I know that it isn’t my fault, but the shame is still deep and burning. The sadness of being denied accessibility isn’t only for all the practical problems it causes – it’s just as much about the message that refusal of accessibility sends me. The message that says that I’m not worthy the access to healthcare or that my kid isn’t worthy of access to education. That we’re asking for something unreasonable when we’re asking for the same things as abled people. Like we’re not real people.

It seems like the grieving hits me like a tornado every time I’m told that accessibility won’t be created for me or my kid. Every time I’ve had a long email conversation, filled with efforts to make the receiver understand my or my kid’s needs, and finally get a clear answer instead of the endless BS of circling around my question, it hits me with a pain I thought I would get used to. But I’m not getting used to it. My skin isn’t getting thicker for every time it happens, instead I break more and more and just fall deeper and deeper inte the burning shame.

Because I’m not a real person in the abled world’s eyes, and neither is my kid. I can’t even carry my own pain, and knowing that my kid will go through this is too much. I can’t handle this.

Advertisements

Ramblings from a crisis

TW: Suicide, death, ableism, school

 

I’m thinking a lot about death these days. One moment I’m scared that my heart and the rest of my body is failing me, then suddenly I fee like this life can’t be ended fast enough and maybe I’ll have to end it myself.

I can’t end  my life, because I have to save my kid. But I can’t do much for my kid, I’m trying but it’s not enough.

I feel like I’m a burden to my partner, because my partner needs to focus on finding a school that won’t harm my autistic kid.

Sorry, this isn’t much of a post. This is just a bunch of desperate thoughts, because I can’t take this hell for much longer and no matter how hard we try, it’s not enough. Being an autistic kid who learns easily but are harmed from an allistic culture means there are no accessible schools.

As usual, I really don’t want any advice. If you comment or email me telling me what to do I’ll block you. I’m not writing this because I think anybody can solve anything for me, I’m writing this because my thoughts are too heavy to stay in my head.

Dear Autism Professionals, Please Stop Harming Us

Dear world,

Dear social workers, psychologists, teachers, doctors, principals, and all the other people that I sometimes have to interact with as a parent of an autistic kid,

Please stop making our lives a living hell.

I’ve written several posts about how Autism Parents are making autistic people’s lives hell recently, but it’s time to address what I think is one of the root causes of the Autism Parent ableism: You, the autism professionals who are very ableist and also exercise more power than you seem to understand.

No, I don’t mean all autism professionals, because some of you aren’t ableist. However, I refer to the vast majority of all the professionals I come across who are supposed to make my kid’s life better but somehow manage to do the opposite.

I mean you, if you are a principal who refuses to give my kid the support and accommodations that he needs and is legally entitled to, and instead blame my kid for avoiding demands.

I mean you, the spec ed teacher who thinks that I give my kid too much AAC, because you don’t understand that AAC is a way of communicating that reduces my kid’s stress level.

I mean you, the doctor who told my kid that he’s too used to getting what he wants when he told his dad that he didn’t want to be in your office because you had avoided to give us information about why he had to see you.

I mean you, the psychologist who tried to convince me that I should make my kid “practise” being around noises he couldn’t handle.

I mean all of you who believe in myths about autism. All of you who are treating autistic people like we weren’t real humans with feelings. I mean those of you who thinks that autism is just a lack of motivation and therefore we just need to be pushed and pressured with threats and gummy bears.

I mean those of you who don’t pay attention to what autistic people are trying to tell you.

Please stop. It doesn’t matter how admirable your intentions are, if you aren’t listening to autistic people, reading what we are writing, looking at us signing or looking at the pictures we use, you are harming us because you will have gotten it all wrong.

Open Letter To Autism Parents

This post includes mentioning of ABA, puzzle pieces and functioning lables

 

 

Dear Autism Parents,

We need to talk again. At least I want to talk to you.

Just like you, I’m a parent of an autistic kid. Yes, you probably prefer “child with autism”, but for once, let’s not focus on that. Let’s focus on autistic minds, and what your neurotypical perspectives do to all autistic people around you.

I’m a parent of an autistic kid, and I’m autistic myself. This means that every time you express how angry or sad you are about what you think that autism is doing to you, you don’t only assign blame to your child, you also tell all autistic people of all ages around you that you blame people like us. That you blame the way we react to food and noisy environments, how we process information and how we express ourselves, for causing you discomfort and pain.

You are entitled to your feelings, and so am I, and therefore I will tell you how I feel about your behavior.

Just like many of you, I sometimes seek out other parents of autistic children in an effort to give my kid the best life i could possibly imagine. I might try to work with you to advocate for more accessible schools and healthcare, because just like you, I don’t want my kid to get PTSD just from going to school. However, I’ve realized that I’m not welcome in your world. When you talk about how autism has destroyed your life, you make it very clear that you are blaming autistic people, instead of focusing on ableist structures.

What’s even worse is that you center neurotypical, allistic and ableist views and make me feel ashamed for the way I communicate. I know that you are doing this because you are suffering from knowing that your kid is suffering (not necessarily from autism though, but likely from ableism), but I urge you to think of this: When you are promoting ableist ideas, you are making life worse for your kid and all autistic people. It doesn’t matter how great your intentions are – when you call the need for accessibility “special needs”, when you use functioning lables and when you spread puzzle pieces and refer to autistic people as “mysteries to solve” – you dehumanize us. Dehumanization feeds ableism. We will never have an accessible society that respects autistic people as long as we are dehumanized.

But you know what? There’s another option. You have an autistic child, but you don’t have to see autism as a disaster. It’s totally possible for you to direct you anger and grief to the ableism that’s making life hell for your kid. Because you know – autism isn’t a disaster, ableism is.

I know that it’s hard. Just like you I have been fed all those ableist ideas about autism from healthcare professionals. Just like you I was told that I have to put my kid through ABA, “otherwise he could never grow up”. I’ve had doctors, nurses, psychologists and social workers telling me all those lies about how meltdowns are just a way to avoid demands, that my kid has to be taught not to stim and that putting in a lot of time on behavioral therapies is necessary if I want to give my kid any chance of ever having a good life. But the thing is, none of that is true. You have the option of looking beyond ableist ideas and start paying attention to what autistic people are trying to tell you.

If you decide to start paying attention to what autistic people are saying, you will learn that our lives have meanings. That we connect with each other, we have meaningful relationships and we are able to experience joy and happiness. You will also learn that we are harmed and hurt by an ableist world trying to normalize us, and that will probably not be a pleasant reading to you. When you read about all the violence and abuse we experience, remember that you can be a part of putting an end to it. By refusing the ableist ideas that a lot of healthcare professionals are promoting, and instead listening to autistic people to learn about autism, you can make a difference.

It’s your choice.

Sincerely

the uninspirational

 

Intimacy without trust

I want to write about forced intimacy. About the so-called intimacy that I might say yes to, because I don’t really have that much of a choice. About situations where the level of intimacy isn’t matched with the same level of trust. Is it really intimacy? Or is it just somebody in a position of power disrespecting boundaries?

I suddenly got a new person performing the disability services I’m granted. One day last week the manager texted me saying that the former person is ill, could she start the introduction with a new person tomorrow?

I wasn’t ready for a new person with such short notice. I was in a really bad shape and that makes me very vulnerable, a single little misstake can make my symptoms worse. But I said yes, because what would have happened if I said no? I would be a burden. A difficult person causing the manager problems. How would that affect the help I receive?

The new person, V, has had two days of introduction. Today she came on her own, even though I had no idea that her introduction was over. I don’t know her. I didn’t even had a phone number to her so I couldn’t text her, which meant I could hardly communicate at all with her since I have a hard time talking most mornings. I don’t want a stranger coming into my bedroom, but I have accepted that I need somebody to bring me breakfast in the morning. But when the manager just sends someone that has been here twice when I’ve been in a really bad condition, that means that I don’t even get a fair chance to get to know her. The intimacy is forced upon me. I didn’t get a chance to say that I’m not ready to have her in my bedroom yet.

Later this week, she’s supposed to assist me before and after my shower. She hasn’t even been here during a shower day yet. There are written instructions for her but how am I supposed to trust that she has understood them? That she will respect that she’s not allowed in my bedroom for 15 minutes after my shower, because I’m half naked putting tape on my hypermobile joints?

There’s something weird about disability services being organized in a way that requires me to comply with an intimacy level without being able to demand a matching level of trust. I guess it’s called ableism.