You are entering the Independence Zone!

Happy July 5, readers!

I hope everyone had a marvelous Independence Day. Myself, that day has always been kind of a hard day for me, for many reasons. I find fireworks too loud and invasive (when you have no depth perception or peripheral vision, they always look like they’re invading your personal space). I don’t do heat and bugs, and many of the activities people do on Independence Day are pretty physical. Basically, I want to get in a time machine and tell the Founding Fathers, “Dudes, you couldn’t have declared your freedom in January? October? Even April, for crying out loud.” But, as important as I know independence is, I’ll go with it.

As you might anticipate, Independence Day also makes me think of independence for people with disabilities–or the lack thereof, in many cases. It makes me think about what I do as an advocate. And that brings me to today’s post, a question that occurred to me a little while ago. I think it’s time to face, and try to answer, whether advocates have savior complexes.

I began asking myself this question several months ago after seeing an article written about the film The Zookeeper’s Wife. If you haven’t seen the movie or read the book, it’s about a German couple who use their zoo as a way to protect and save Jewish people from the Nazis during World War II. It’s a great story, but the article I read gave me a new perspective on it. The writer claimed stories like The Zookeeper’s Wife consistently put Gentiles in a savior role, while making Jews look and feel like pathetic, helpless victims. The author claimed such stories tend to appropriate the Jewish experience, or tell only the parts of it that would benefit the Gentiles, the “heroes.” The fact that the Jewish people of the 1940s were heroes in themselves is hardly ever mentioned in these stories, the author claimed.

Now, this author wasn’t Jewish, so I knew the beef wasn’t personal. I also questioned how seriously the article’s claims should be taken. The writers of TZW and stories like it were, I felt, not trying to discount anyone or make them feel like victims. In my experience, such stories usually celebrate the triumph of the human spirit, Jew, Gentile, or otherwise. There was a part of me that said, “Great, more political correctness gone mad.” But then I put myself in the author’s shoes and thought, “She may have a point–and a big one at that.”

Let’s replace “Jewish” with “disability” for a minute. In fact, for a minute, let’s use the word the world tends to use. Let’s replace “Jewish” with “disabled.” If the people being saved or protected in a story like TZW had disabilities–were visibly different–would the story change? Would temporarily able-bodied people look more like Superman and Wonder Woman?

We know the answer: yes. We know that answer because we see it all over the media. The child who stands up to a kid bullying his friend with a lisp, stutter, or brace on the playground is always the hero of the after school cartoon. The man in a wheelchair who makes a brilliant presentation at work is only able to do so after people have cast aspersions on his abilities–and after a TAB coworker gives him a pep talk. The police officers who find the autistic child who wandered into the woods are (rightly) held up as heroes, but no one ever credits the autistic individual for surviving, remembering certain skills, or knowing what to do. The media definitely has a savior complex when it comes to PWDs because we are so often portrayed as helpless. But are advocates, who want to change that, part of the problem, too?

It’s a thorny question. It’s one I wrestle with a lot. I don’t want to be anybody’s savior. I don’t want people to call me a hero for saying what common sense should dictate about a fellow group of human beings. But if we as advocates aren’t careful, the savior complex can slip into what we do and say. To avoid that, here are a few tips.

-Make sure the person you’re speaking up for really wants the help. In other words, never assume that because a PWD is standing on a full bus, it’s because people refused to give up their seats. Don’t start yelling at or shaming TAB people when you see a blind person navigating a crosswalk alone. It’s a lot more productive to say, “Would you like my seat” or “Excuse me, would you like help?”

-Give PWDs in your life the opportunities to do real things. The reason PWDs are so often painted as needing to be “saved,” is because they aren’t given the opportunities to save themselves, achieve what they want to achieve, etc. The “classic” portrayal of a PWD–someone who stares at the floor, slumps to avoid being seen, and is only spoken to/about in terms of disability–is a victim. That portrayal says to the TAB world, “If you don’t help them, who will?” (Which, what is up with that–we are not the stars of an ASPCA infomercial)! A PWD who goes to school, hangs out with friends, joins clubs, pranks coworkers, and buys a date a drink–that person may need someone to stick up for them now and again. But in general, that person is just as able to rescue or protect as anyone else.

-Be careful how you speak. In other words, yes, we should talk about the flaws of the medical model of disability. We should talk about the flawed logic in constant separation and segregation. We should expose the truth behind group homes, sheltered workshops, and the like. But we have to be careful how we couch it. I remind myself of this a lot, because it’s easy for me to get angry at the injustice of these things and therefore, think all doctors, all group homes, etc. are bad. As much as possible, resist the urge. For example, don’t blame doctors for doing their jobs the best they can. If they really have crossed the line, such as in telling you your baby with Down Syndrome should automatically be institutionalized, call them out. But don’t paint the whole group as evil. Same goes for group home administrators, special ed teachers, etc. I *know* how hard this can be, but it is worth it.

-Rein it in. As tempting as it can be to get on a soapbox, wait until the conversation actually lends itself to an advocacy discussion. Again, I have to do this a lot, especially around certain people (teachers, college students studying therapy or special ed, and so forth). If we talk about PWDs outside advocacy, we will teach the rest of the world they are more than the latest marginalized group.

-Give yourself a break. If you’re an advocate who also has a disability, like me, you may find advocacy harder because hey, it’s your whole life. You don’t know what it’s like not to have to stand up for yourself, or have others stand for you. It can get exhausting, and take that from someone who knows. As much as you need to, take a break. Say, “I’m not going to think about my (X disability) today. I’m just going to have fun/be me/do what I need to do.” If the environment makes that difficult, reach out for help, or leave the environment when you can. If you need to, say no. Example: When I get invited to fireworks displays I now say, “Thanks very much, but they aren’t my thing.” That gives me the freedom to curl up with a book, be quiet, and indulge my right not to think about how disability affects my Independence Day experience.

It is our right to advocate, and PWDs do need that. They welcome it in many cases. Yet it’s often easier and more productive to let us advocate for ourselves. Let’s all advocate together, the right way, so we can all experience independence and heroism.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: