Two ways in which representation matters

There seems to be a major disconnect about what it means for a conference to have disability representation. I’ve seen a version of this happen a number of times:

  • A panel on diversity or social justice has no disability representation. 
  • No panelist talked about disability as a justice/diversity issue, or even alluded to disability experience.
  • A disabled person points out the problem to the organizers. 
  • The organizers say something to the effect of “Actually, one of the panelists has [some disability or other]”.

Organizers are sometimes genuinely confused about why this isn’t a solution, and I’m realizing that this is in part because “representation” means at least two different things:

Sometimes representation just means diversity of panelists, ie: 

  • There need to be panelists who are disabled (and in many context, there need to be panelists who are *openly* disabled). 
  • This is important in part because when there are no openly disabled people on a panel, this is often a sign of disability discrimination.
  • (Especially if there are no disabled people on *any* panels at a conference, or there are only disabled panelists on disability-focused panels.)
  • In some contexts, diversity of panelists is enough.

Sometimes representation means literally being a representative of a community or movement: 

  • Sometimes it’s not enough to have diverse panelists. Sometimes it’s necessary to have panelists who can represent other disabled people by speaking on behalf of an organized disability community or movement. 
  • In many contexts, there need to be panelists who can speak from a position of expertise about disability issues.
  • For instance, if the topic of the panel is intersectional activism or collaborating across movements, you need someone who can represent at least some part of the disability activist community.
  • Diversity of identity is not enough in this case, because having an identity is not the same as representing an organized advocacy community.
  • Being disabled does not in and of itself make someone a well-informed representative of the organized disability rights community.

Sometimes conferences forget that disability is a justice issue, and neglect to book anyone who can address disability as a justice issue, eg:

  • A conference holds a panel on intersectional advocacy called “Showing up for each other: Owning our privilege and leaving no one behind”.
  • The panel consists of an LGBTQ group, an anti-racist group, an economic justice group, and a feminist group.
  • None of the panelists are disability rights leaders.
  • None of the panelists talk about disability rights issues.
  • None of the panelists even talk about their own disability experiences.
  • On a panel about intersectionality and showing up for each other, disability issues are completely overlooked. 
  • Even if one of the panelists happens to have a disability or medical condition, this is still a problem.
  • (Especially if the organization holding the conference has a consistent pattern of overlooking disability issues.)
  • In this case, something has gone badly wrong and the conference needs to make an immediate plan for making sure it doesn’t happen again.

Sometimes conferences forget that diversity still matters when the topic isn’t disability or general intersectionality:

  • Not all disabled activists are disability rights activists.
  • Some disabled activists are focused primarily on other issues.
  • Eg: Some disabled activists are leading LGBTQ rights projects; some disabled activists are leading anti-racist organizations.
  • If disabled activists presenting about disability are the only disabled presenters at your conference, something has probably gone wrong.
  • If there are no disabled people presenting on any other topics, it’s important to think about what they is and what could be done to fix that.

Sometimes conferences forget that the disability community is diverse:

  • Many disability rights activists are also marginalized in other ways.
  • Many disability rights activists are also women, gay, trans, black, poor, Jewish, Muslim, immigrants, several of these, or otherwise multiply marginalized.
  • Eg: If all of the disability rights activists presenting at a conference are straight white Christian men, something has probably gone wrong.
  • If the range of disabled presenters at a conference doesn’t reflect the diversity of the disability community, it’s important to think about why that is and what could be done to fix that. 

Here’s an example of representation in both the diversity sense and the community representative sense:

  • There’s a writing conference or a comic conference or something.
  • Access needs are met in ways that make it possible for disabled people to go to the conference and present at the conference (without facing insurmountable or humiliating barriers).
  • General panels about diversity have disabled panelists knowledgable about disability issues.
  • Panels that are specifically about disability are lead by disabled panelists.
  • Many panels about topics *other than* disability have panelists with disabilities on them, in numbers that reflect the fact that disability is common.
  • Some disabled panelists on panels about topics unrelated to disability/diversity talk about disability and some don’t.
  • (Because not all disabled people are or want to be disability advocates.)

Short version: Representation on panels means at least two things. Sometimes it means a diverse range of panelists; sometimes it means panelists who literally represent a diverse range of communities. Scroll up for reasons this matters, and what problems can be caused when only one type of representation is considered.

Care Bear Stares do not work in real life

In the Care Bears movies, the heroes could solve just about any problem by speaking truth to power. Whenever a handful of bears cared enough to act, they could get together and give the villain the Care Bear stare. Their intense caring made the villain care too — at least until the next episode. (And in the movies, it was sometime permanent.) Whenever they weren’t solving a problem, it was because they were failing to care about it. The real world does not work that way.

In the Care Bears world, caring is magic. In real life, it’s not enough to care about something — you also have to have power. It’s not enough to know what needs to change — you also have to have a strategy for changing it. Sometimes speaking truth of power can be a source of power; sometimes you need other kinds of power. Sometimes you need to vote, get out the vote, build coalitions, wait for the right moment, make compromises, fundraise, reach out behind the scenes or otherwise find another source of power. Most real-life power is partial, most real life change is not fully satisfying — but it’s real, and it’s worth pursuing.

People unfamiliar with advocacy sometimes cause problems by expecting Care Bear stares to work in real life. They assume that any group of activists who cares about something should be able to get together, speak truth to power, and change hearts and minds with the sheer power of concentrated caring. As a result, when they see that a handful of activists who say that they care about a problem have not solved it, they angrily assume that this means that the activists just don’t care enough to be willing to do the Care Bear stare. When people aren’t solving a problem, it’s important to ask *why* they’re not solving the problem. Sometimes it’s because they don’t care, but often it’s because they don’t have the power to make all of the change they want to make. Often, they’re doing the best they can with the resources available to them.

This also happens in politics: For instance, people sometimes ignore the implications of the fact that the Democrats are the minority party in Congress and that there is a Republican in the White House. They believe, implicitly, that if the Democrats just *cared* enough, they would be able to stop the Republicans from passing bad laws and appointing awful people — and that they could pass the laws that we need without any Republican support. They sometimes reach the dangerous conclusion that Democrats don’t really care and aren’t worth voting for. But in real life, Democrats don’t have the option of using the Care Bear stare — they need power. If we want the Democrats to have the power to protect us from Trump and pass better laws, we have to vote in more of them.

People also sometimes expect *themselves* to be able to use a Care Bear stare. People stuck in this mindset feel a lot of shame when they notice problems that they don’t know how to solve, because they it must mean that they don’t really care as much as they think they do. It is much more helpful to understand that caring about problems does not in and of itself create the ability to solve problems.  In real life, you won’t have the power to fix everything you want to fix, but you will have the power to fix something. When you accept that caring doesn’t create power by itself, it can enable you to find the things that do — including solidarity with other advocates who are doing the best they can.

Short version: Care Bear stares do not work in real life. In real life, caring about a problem does not in and of itself create the ability to fix the problem. In real life, you also have to have power. When people ignore power and expect caring to fix everything, it creates a lot of problems in advocacy.

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

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.

Activism must not be derailed by behaviorism

Behaviorist ideology says that there are four basic reasons people do things: to get things/activities, to get pleasant sensations, to avoid something they dislike, or to get attention.

All of these are real reasons people do things, and it’s useful to keep them in mind. It’s also important to remember that they are not the only reasons people do things. People also have thoughts, feelings, and values.

This behaviorist framing assumes that human beings are fundamentally amoral and selfish.  Behaviorism has no room for courage, integrity, or concern for justice. In real life, values matter.

For instance: People who would not steal to support themselves will put their lives on the line to protest cuts to Medicaid. People who find it humiliating to be publicly praised as ~inspiring~ will call congress to fight bad policies, including bad policies that affect groups other than their own. There’s more going on than attention. Values matter.

In activism and advocacy, it’s often useful to show others that it’s in their interests to support our policies. (Eg: “Your constituents care about Medicaid, and you’ll lose your seat if you vote for a bill that would cut it”, or “No matter how responsible you are, you could get sick tomorrow and need access to Medicaid.”

It’s *also* useful to show them that the policies matter within *values* they already care about. For instance, if someone cares about religious freedom, it could be useful to point out that institutionalized people lose access to their houses of worship and other things they need in order to practice their religion on their terms. If someone cares about encouraging people to work, it could be useful to point out ways in which Home and Community Based disability services make it possible for people to work.

It’s also important to make a case for our values more broadly. People don’t understand what ableism is and why it’s bad. Many people are receptive to learning, if it’s explained in a way that they can understand. It’s not just about self-interest. It’s also about values. People can understand right and wrong, and act accordingly, whether they are marginalized or privileged.

Privilege doesn’t need to prevent someone from being a good person and doing the right thing. There’s more to life than behaviorism and self interest. People are capable of caring about their values more than they care about enjoying the advantages of privilege.

Short version: Behaviorism reduces everything people do to self-interest, with no room for values. Activism based solely on privilege analysis falls into the same mistake. We need to keep in mind that all people are capable of learning to tell right from wrong and act accordingly. We need to make the case for our values, in a way that people can understand. Lives depend on it.

You can only fight evil as the person you really are

When you’re fighting evil, it’s important to be aware of your limitations. You can only fight evil as the person you really are. Trying to ignore your limitations will not make you a better activist — it just crushes you.

Fighting evil is a lot of hard work. It’s not just about being a good person, or caring, or having the right values. Mostly, it’s work. And no one has infinite capacity to do that kind of work.

In fact, no one has infinite capacity to do *any* kind of work. As human beings, we’re limited. We have bodies, and needs, and we can’t do everything. Trying to work flat out all the time doesn’t end well, no matter how important the work is.  

One of the things we need is love. Part of that is being aware that not everything is evil. Some things are good. Some things are amazing. Some things are important in other ways. And, no matter what, people matter, and our world is worth fighting for.

Fighting evil is incredibility emotionally draining. In order to fight evil, it’s generally necessary to come into close contact with it. And to face the fact that not everyone is on your side, and not everyone means well. Many people act with active malice or callous indifference. It can be very hard to keep going when you lose an important battle and feel the weight of the consequences. It can be very hard to avoid slipping into despair. Love is one of the most powerful defenses against despair.

It is not only ok but *necessary* to find things that you can value and enjoy. Valuing your own life and the things you enjoy is an important act of resistance. Keep in mind that one of the lives you’re fighting for is your own. You are worth fighting for.

You may have to do hard, draining things that no one should ever have to do. You may have to make sacrifices. You may need to learn how to do things you never thought you’d need to do. But you don’t have to do more than you’re capable of doing — and trying to ignore all of your feelings and limitations will not help.

Understanding your limitations actually makes you more effective (at activism and at anything else you might want to do.) Working with your brain and body works better than trying to become a superhero through sheer force of will. You can only fight evil as the person you actually are.

Finding what you can fix; living with what you can’t

Activism and advocacy are emotionally difficult on a number of levels.

One reason is that the problems that need solving are enormous.

No one has the capacity to solve all of them. Everyone has some degree of power to act; nobody has the power to fix everything or address every injustice.

Making the world better is largely a matter of seeking out opportunities to act. Caring about the problems isn’t enough. Being willing to fight for what you believe in isn’t enough either.

It’s important to look for circumstances in which you have power to make something change. If you look, you will find some — and not others.

The opportunities you have to create change are not always the opportunities you care about most. Caring deeply doesn’t always create power.

And there are always tradeoffs. There will often be situations in which there are many things you could do — and only the resources to do one of them.

There are usually compromises. Victories are usually partial. And they often involve complicity in things you’d rather not be complicit in.

And in order to find the opportunities to change things, you have to keep looking — even though this means you’ll see things you can’t fix.

This can be very hard to live with. It can be tempting to believe that if you just tried harder, you’d be able to fix everything. Or that if you cared more, you’d be able to do everything. Or that if you were a better person, you’d be able to avoid making compromises (or working with people who do bad things).

I think it helps to remember that it’s like this for everyone. No one can fix everything; everyone has to make choices and compromises.

I think it also helps to remember that the problems exist whether or not you’re looking at them. Looking at the problems hurts; it also gives you the chance to do something about some of them.

It’s also important to remember that you matter, and that there are things in the world that are good. Not everything is horrible (even though sometimes it feels that way); a lot of things are good. And people matter and are worth loving now, as things are. Activism isn’t about hating everything; it’s about making things better. And recognizing already-good things and valuing people both actually help with that.

Short version: Activism involves caring about more things than you can fix. It involves a lot of tradeoffs and difficult choices. It’s not your fault; it’s like this for everyone. You can’t fix everything; you can do work that matters and make some things better. Remember that the world contains good things too.

Advocacy is not cute

Sometimes disabled people get treated like they’re not adults.

This is particularly true when people with disabilities are involved in disability related advocacy. And it goes triple for people who have intellectual disabilities. (Or are perceived to.)

If you’re doing advocacy and someone treats it as cute, they’re being rude. If someone treats your presentation like a game you’re playing, they’re being rude. People should have more respect than that, even if they disagree with the point you are making.

If you think someone else’s advocacy is cute, it’s probably important to work on learning to respect them more.

When you want to start changing the world and it feels daunting

I’ve learned a lot about rape and rape culture from Tumblr, and now I want to start educating people. However, I am quite socially awkward, so I’m not really sure when and how to bring it up appropriately. Also, how do I make sure I don’t overwhelm them when it is the first time I am talking about rape culture to them? Should I arrange a campaign at my high school or should I talk one on one? Also, I don’t want to trigger anyone, how do I do that?