Tag: support

We need to be as good at lifting up as we are at calling out

Real Social Skills

In advocacy/activist space, we’ve gotten really good at noticing and naming oppression. We’ve gotten really good at criticizing the things that people are doing wrong, and demanding change. We’re also good at noticing organizations and people who shouldn’t be supported, and explaining why people shouldn’t support them.

This is important — and it’s not enough. We need to be equally good at noticing and naming things that *are* worth supporting. We need to be equally good at noticing what people are doing well, describing why their approach is good, and finding ways to support it. Calling out isn’t enough. We need to seek out things to lift up.

When we focus exclusively on finding things to call out, we send the implicit message that nothing good anyone is doing is worthy of our attention. But none of the work of building a better world happens by itself. It depends on the people who are putting the effort into doing the work. When we ignore the value of the work people are doing, we both harm those people and the work itself.

The work is hard, exhausting, and vital. It’s also often thankless — because we’re not acknowledging it in the way we need to be. Often, doing activism and advocacy means signing up for a life of being paid less than a living wage (or volunteering your very limited time), having your work ignored, and being noticed by your community only when people are angry at you.

This is particularly common when the work is done by marginalized people. Our culture socializes us to ignore the work that women and other marginalized groups do, except when we find reason to criticize it. This dynamic carries over into activism/advocacy spaces. It’s just as toxic when we do it as when corporations do it.

There’s nothing inevitable about this. We can make it stop. We can pay attention to the work people are doing, and we can show respect to the people doing it. We can describe the worthwhile things people are doing, and talk about why they should be valued. We can seek out ways to support what people are doing, whether that means donating, signal boosting, going out and voting, connecting people to each other, or any number of other things. By getting just as good at support as we are at call outs, we can make the world much better.

You don’t have to earn support with a diagnosis

Real Social Skills

If you were hurt and you’re struggling to cope with the aftermath, that matters. It’s ok to be struggling. It’s ok to need support.

You don’t have to earn support with a diagnosis of something trauma related. You don’t even have to fit diagnostic criteria for a mental health condition to be worthy of support.

Getting hurt matters whether or not it results in PTSD or other diagnosable mental health conditions. There are a lot of different ways that people respond to trauma. In particular, not everyone who experiences abuse or other trauma develops PTSD. It’s ok to want support and to talk to other people whose struggles are similar to yours, whether or not your experience involves PTSD.

It’s also ok if the thing that hurt you wasn’t abuse, or if you aren’t sure whether you think it was abuse or not. It’s ok to need help and support even if it *wasn’t* abuse, or even if things are ambiguous, or even if what happened to you wasn’t anyone’s fault. Not all trauma is the result of abuse. Not all trauma is anyone’s fault. You don’t have to earn support by fitting a particular narrative. You don’t have to earn support by being ideologically or politically useful, either. You matter, it matters that you got hurt, and it’s ok to want help sorting things out.

It’s also ok to relate to and benefit from things that match your experiences partly, but not entirely. (Eg: it’s ok if something written about homophobic bullying helps you to deal with the medical care you experienced in the aftermath of a car crash; it’s ok if something written for people with intellectual disabilities helps you to cope with being the target of transphobic bullying. It’s also ok to use a type of therapy that was initially developed or is usually used to address a different problem than the one you have.)

All of this stuff can be hard to sort out. It’s ok to be struggling. It’s ok to seek help and support where you can find it. You matter, and your experiences matter.

Finding things you can fix when things are really wrong

Real Social Skills

ischemgeek asked:

Advice on expressing sympathy and lending emotional support to a family member whose child may be facing a serious illness? Both for the “dunno for sure” phase and for the “know for sure either way” phase. Comforting is not my strong suit and halp plz because this can’t be fixed so soothing is only way to be helpful.

realsocialskills said:

This is the second part of my answer to this question. The first part was about emotional support. This part is about practical support.

I think that there are probably some things you can fix in this situation.

The problem of possible illness can’t be fixed. Secondary problems surrounding the situation *can* be fixed.

When a child is facing a serious illness, all kinds of practical things get complicated. Diagnosing and treating illness involves a lot of medical appointments, tests, insurance wrangling, and other complications. And it happens with no warning, when people are already busy with other things. They’re probably both physically and emotionally exhausted. They probably could use a lot of help.

Some possible problems that might be solveable:

Childcare:

  • If you live nearby and are comfortable babysitting, offering to watch their kids some could be really helpful
  • If they have other kids, someone has to watch them while they’re at medical appointments with the possibly-sick kid
  • Suddenly needing more childcare than you expected to need is a logistical nightmare, and it is very likely that they don’t have as much help as they need
  • Even if they only have the one child, more childcare would probably be helpful
  • The obligations of life don’t go away when a child gets sick, and there are likely many things they’re behind on that are hard to catch up on while caring for a child

Helping kids with homework:

  • If their kids go to school, they likely have a lot of weekly homework that they need adult support with
  • This can get very complicated if parents are suddenly very busy and emotionally exhausted
  • Even if you don’t live nearby, if you can be available for some homework help over email or Skype, that could take a *lot* of pressure off of the family.

Communicating and running interference:

  • When a kid gets sick, a lot of people want constant updates
  • This is generally exhausting and burdensome to the kid and the parents
  • Sometimes it helps to have a point person for updates and boundary-assertion
  • Or someone to run a CaringBridge page so they don’t have to
  • I don’t know if they’d want this or if you’d want to do this; some people find this helpful but I don’t know what they want or what your relationship with them is like

Helping them with the insurance company and other bureaucracy:

  • If they are in the US, an insurance company is probably being awful to them and refusing to pay for things
  • Or making things needlessly complicated and confusing
  • They also might need to apply for government or charitable assistance at some point
  • Which is hard to do when you’re overwhelmed and exhausted and have never done so before
  • If you’re good at navigating that kind of thing, you might be able to help them
  • Or you might be able to do research and find out things that can help them
  • Again, I don’t know if they’d want this kind of support from you or not. Some people do; some don’t

Money:

  • Illness is expensive no matter where you live, even under ideal circumstances
  • And unexpected major expenses make life really hard
  • If you are in a position to help them financially, it would probably make some things significantly easier for them
  • Money can’t fix the biggest problem, but it can go a long way towards fixing the secondary problems

Other general life logistics: There are a lot of things that get hard when there’s a crisis, that they might welcome help with:

  • Keeping their house clean
  • Cooking some food (or ordering them the occasional pizza)
  • Mowing the lawn if they have one
  • Getting groceries and supplies
  • Picking up prescriptions
  • Getting kids to and from school
  • Keeping their computers and network in good working order
  • Making sure bills get paid on time

These are the things I can think of offhand. I don’t know which, if any, it makes sense for you to do. I don’t know the extent to which your relationship with them makes help appropriate. I think it is likely that there are things that you could do to be materially helpful — and also important to realize that you don’t have to do all of them (and probably shouldn’t).

Short version: When someone’s facing a major life problem that you can’t solve, they’re generally also facing secondary problems that it’s possible to help them with. Scroll up for some specific suggestions.

Complicated power relationships in a work context

Real Social Skills
A reader asked:
Someone contracting with you to do something is like a boss, but it’s a different relationship; such a person is a client and a client is more like a customer. It’s your job to do what the customer wants but the customer isn’t in charge of the business. Or maybe I’m off base. Of course, if the disabled woman didn’t hire and can’t fire this person, the person’s working for the parents, then, aren’t they?
I think the power relationships between assistants/PAs/whatever and folks with disabilities are a lot more complicated than that.
Even with a direct hire, it’s more complicated than other types of employment. For instance, hiring someone to write a webpage for you is really different than hiring someone to do things you need in order to survive.
Especially, given that when people murder folks who are disabled enough to need extensive care, they often get away with it.
And there are all kinds of complications I don’t understand well.
I don’t know more to say about this, though. Do any of y’all?

Autism awareness for aides

Real Social Skills

flannelfrog asked:

I recently got a job offer to be an in-school aid for a gradeschooler I know with aspergers and I’m genuinely afraid to take it because, while I have teaching experience, I’ve never been an aid before. I’m afraid I’ll do something wrong and mess the kid up for the rest of his life. Do you have any advice for me?

Several piece of advice:

First, shift the way you’re thinking about this.

The problem before you is how to do right by a kid in your care. Thinking in terms of wanting to avoid doing something wrong and messing the kid up for the rest of his life is going to make it harder for you to do right by him.

You’re going to do things wrong (you’ve done things wrong in every teaching job you’ve had, it comes with the territory); and it’s going to be important for you to acknowledge and fix your mistakes. Making possible mistakes, even serious ones, a referendum on whether you are a good person, makes it a lot harder to do right by others. I’ve written about that before, here.

Treat him as a person

  • Almost universally, autistic people are treated as though they aren’t quite real, especially by caregivers
  • Often, they think of this as looking past the autism to see the real person
  • But the autism is part of who he is.
  • Don’t attribute some things to him, and others to the autism. He is real all the time.
  • He is a real person. Already.
  • Your job is not to cure him. Your job is to support him and help him to develop his abilities. Learning to do more things will not make him any less autistic, nor should it.
Do not try to make him indistinguishable from his peers
  • Because, seriously, what kind of a goal is that?
  • He’s worthwhile as a person, and he’s different from most other people, and it’s ok.
  • He has better things to do with his time than fake normal.
  • Being able to do awesome things is way better than being able to look normal while doing pointless things
  • It’s ok to be different.
  • Don’t pretend that he’s really just like everyone else, or that he will be when he grows up.
  • One of the most important things you can teach an autistic child is that it is ok to be autistic

Forget everything you think you know about the difference between autism and Asperger’s syndrome:

  • People whose diagnosis is Aspergers syndrome are autistic
  • Autistic people who can speak are disabled
  • There isn’t actually any fundamental difference
  • Except that people considered autistic are often seen as incapable, and people considered to have Aspergers are often seen as faking their difficulties
  • Assume disability and ability, and that you will have to figure out how that works for the person you’re working with

Learn how he communicates.

  • All autistic people have some sort of atypical communication
  • Some autistic people are really good at hiding it, and looking normal at the expense of understanding what is going on.
  • Autistic children, particularly boys, often pretend to be acting out in order to mask disability. Be mindful of this possibility.
  • A good percentage of the time, when autistic people repeat things over and over, they are trying to communicate something and aren’t being understood. Be aware of this, and learn how to make communication possible in this situation.
  • If he seems not to understand something, do not get angry and assume he’s just being defiant or lazy
  • Some things are really really hard to understand, even though they seem simple to people with typical development
  • For instance, an autistic child who has been isolated might find fiction other kids their age understand completely incomprehensible because they can’t relate to the experiences and relationships it describes

If he makes repetitive motions, assume they are important:

  • A lot of autistic people rely heavily on motion to think well
  • Or to communicate
  • Or to understand things
  • Or to find words
  • Or to regulate themselves.
  • If you prevent an autistic person from making repetitive motions, you’re probably also preventing them from doing things like understanding what’s going on, communicating, and learning self-control and interaction.
  • Do not value a typical affect over learning and communication.
  • Do not say “quiet hands” for any reason ever. (Unless you’re saying something like “people shouldn’t tell you ‘quiet hands’”)

Do not make him follow rules the other kids are allowed to get away with breaking

  • Because that’s unfair, and humiliating
  • And it also prevents peer relations
  • It also prevents him from learning how rules actually work, which is a vitally important skill, especially for people who are likely to spend large parts of their life subject to arbitrary decisions made by people with too much power over them

Do not confuse him about consent, and help him learn what consent is

  • If something is an order, do not phrase it as a request. Doing so teaches people to be incapable of saying no.
  • Ask a lot of questions that actually are requests, and go with what he says, even if it’s not the answer you wanted.
  • If he always says yes when you ask him things, assume this is because he has been taught to be incapable of saying no
  • Ask questions in ways that remind him that saying no is possible
  • Or questions in ways that don’t seem to create a compliant option and a defiant option at all.
  • For instance “do you want to stay inside today, or would you rather play on the swings?”
  • But questions that are real. Not forced choices in which each option is basically compliance.

Support him in navigating the difficult and often hateful world he lives in

  • Do not make him play with kids he dislikes, even if this means he doesn’t play with anyone
  • There are worse things than being alone. Being surrounded by people who everyone insists are nice and your friends, but who actually don’t think you’re real or treat you well is much worse than honest loneliness.
  • It’s possible, and likely, that there are very few kids, or even no kids at all, in his group who it is a good idea for him to spend time with
  • And even if you think he’s wrong about this, it’s a decision he should be making for himself (and his judgement is probably better than yours)
  • When kids or adults do bad things to him (and they will), you usually won’t be able to make them stop. You should tell him that what they’re doing is wrong, and that it’s not his fault.
  • Knowing that it’s wrong, and that others know it’s wrong, helps a lot.

Some things you should read:

  • Ballastexistenz From the beginning. Every post. It has a lot of fundamentally important things about power, and dehumanization, and about seeing people as real. This blog has a lot of the best things that have ever been written on this topic.
  • Rolling Around In My Head is also a really good blog, written by a disabled man whose professional work is supporting people with disabilities. He says a lot of things worth knowing. Also his book Power Tools is important for understanding how this power dynamic works – and your environment and training will put pressure on you not to understand it.
  • Loud Hands: Autistic People Speaking is a really important book about autism and the world written by insightful autistic people. Buy it and read it and understand it, and it will help you to do right by this boy and others