the same

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Us

{image is a photo of Katie, Luau, me and Brooke on the beach at sunset – courtesy of Connerton Photography}

Luau and I started watching The Normal Heart over the weekend. It’s an incredible movie and one that I highly recommend, particularly if you’re not old enough to have been socially or politically conscious through the early eighties. The movie is a small screen adaptation of the play by the same name by Larry Kramer. Kramer, a gay activist / agitator / revolutionary, co-founded Gay Men’s  Health Crisis in 1982, as AIDS (then known as the “gay cancer”) began to emerge, spread, and kill with terrifying speed.

Mark Ruffalo is stunning as the fiery Ned Weeks, based not the least bit loosely on Kramer.  Almost too good, in fact. To be honest, I was relieved when I had to walk away from the movie to pick Katie up at a friend’s bar mitzvah. I needed the two-day break before I could pick it up again. It’s not easy to watch – to feel the frustration and desperation emanating from the screen as these men fight for their friends, their lovers, their lives.

The fight, while obviously foreign in some very important ways, felt eerily familiar in others. At its core, it was a fight for help whose basis was to be found in a quest for respect, for dignity, for the recognition of humanity, of equality, of the most fundamental human and civil rights.

In one particularly compelling scene, Ned gets into a shouting match with his older brother, Ben, who supports him in every respect except the one he needs the most. The conversation that they had was a watershed moment for me. This is how it went.

Ben: We have a difference of opinion over theory.

Ned: Your theory turns me into a man from Mars. My theory doesn’t do that to you.

Ben: Are you suggesting that I did something wrong in sending you to therapy so young? I didn’t know you were going to stay there forever.

Ned: I didn’t think I’d done anything wrong until you sent me there. You mean more to me than anyone in the whole world. You always have. And you’ve got to say it.

Ben: Say what?

Ned: I’m the same as you. Just say it. Say it.

Ben: No. you’re not. I’m not gonna say it.

Ned: Every time I lose this fight it just hurts more. I’m going home.

Ben: Oh, c’mon, Lemon, I still love you. Sarah still loves you. The cat still loves you.

Ned: This is not a joke.

Ben: You have my love. My legal advice. My financial supervision. I can’t give you the courage to stand up to me and say you don’t give a flying f*ck about what I think. Everybody’s impressed by somebody else in some form or another. Most of us learn to fight against it despite people’s opinions without the help of others. Now stop trying to wring some kind of admission of guilt out of me. Agreeing that you were born just the same as I was born isn’t going to save your dying friends.

Ned: That is EXACTLY what is going to save my dying friends.

Ben: You make it sound like I’m the enemy.

Ned: I am beginning to think that you and your straight world are our enemy. I am furious with you. And every God damn doctor who made me feel it was sick to love a man. I am trying to understand why nobody gives a sh-t that we’re dying. Five million dollars for a house; we can’t even get twenty-seven cents from the city. I know forty-three guys who have died and you say it’s my cause, not yours? You still think I’m sick. I simply cannot allow it for one single second longer. I will not speak to you again until you accept me as your equal. Your healthy equal. Your brother.

People often ask why, if I’m as concerned about safety as I am, I share pictures of our family online. They wonder why I tell our silly stories of screwing up and cracking up and laughing at each other and ourselves. They ask why I share so many things that have nothing to do with autism.

My answer is because we are human first. All of us. We’re funny and silly and happy and scared and proud and anxious and insecure and frustrated and hopeful and cynical and madly in love with and annoyed at and proud of and delighted in each other and the world. Because we look just like you (though maybe our skin color is different or we’re shorter or taller or whatever-er, but if you look, really look. I promise you’ll be able to see something familiar.)

In response to a reader who once asked why I chose to share photos of the girls, I wrote, “In the end, though, I think that it’s the three-dimensional people – the beautiful faces that look just like anyone else’s beautiful-faced kids, that make our story relatable to some who might not otherwise be bothered – who might find it easier to dismiss it without the ‘No, we really are real people who look startlingly like you’ aspect.”

We are REAL, INDIVIDUAL PEOPLE. All of us. Me, Luau, Katie and Brooke. And until we are ALL seen as such, rather than three people whose life is affected by the autism of the fourth, nothing will really, truly change.

Because no one is going to willingly join us in creating an inclusive society until they realize that they ARE us. And that we are them. Not just that they can relate to us because they could have or might someday have a child like mine, but that they themselves are just like my child. Her, not me. And that they are like her because as people, while we may come in different genders, colors, shapes, sizes, sexual orientations, and neurological makeups, among myriad other modifiers, we are people first. And whatever fundamental differences we may have from one another aside, we are far, far more fundamentally the same than different. If we are to affect real change, then that’s the part that matters. It mattered to Ned because he saw the hard truth that it’s the only foundation upon which any effective advocacy can stand – seeing, knowing, understanding, recognizing, FEELING that we are, underneath it all, all the same. You, me, Luau, Katie, Brooke … We are people before we are anything else.

Until potential allies, like Ben, believe in our sameness, they might deign to offer their financial support, they might underwrite paper efforts to make change, but they will never give what matters most, the only true vehicle of social progress – their hearts.

This is why I will not participate in the kind of advocacy which relies upon pity for me by virtue of being my daughter’s mother to raise money to (theoretically) help her. Because that kind of thinking will never allow HER to be seen as she is – disabled in some ways, but not sick; different, but no less human than me or anyone else; EQUAL to anyone she encounters. And, simply by virtue of her humanity, as deserving of compassion as she is capable of participating in every aspect of society in her own complicated, messy, beautiful way.

We are different.

We are the same.

We are human.

We are in this together.

That’s where change begins.

6 thoughts on “the same

  1. !!!!!!!!!!
    Keep preachin it Mama, because people are listening.
    Thank you for all your mind blowing, eye opening words….thank you

  2. Dude, so you know how whenever you write a longer, awesome, philosophically bad-ass post, I always write some giant comment because I love it but found some minuscule part of it that I wanted to clarify by writing like three paragraphs about it? ‘Cause I’m like that?

    Can’t find of a single thing to perseverate on this time. Nothin’. This is perfect.

    I especially love it because I was reading something relevant last night; a book that hardcore critiques the way animal rights activists and philosophers use and abuse disabled people in their philosophical arguments about moral competency, and the relative sentience of animals. The author and I are both befuddled at the large numbers of intelligent, highly educated people (many of whom think about ethical problems for a living) who don’t think that, as you say, “We are people before we are anything else.” My favorite are the Peter-Singer-style arguments: “I don’t think using narrow, exclusive criteria to decide who is and isn’t human is like, bad or anything…I just think that my narrow, exclusive criteria are way better than yours.”

    Whenever I argue about this stuff, someone always says “But how are we supposed to define who gets human rights then?” Always. And I always respond with “Why define at all?” Then they bluster for a while. Start talking about “being realistic” and “money” and “how would we decide anything?” They always end up making the same arguments people make when they’re paranoid that “fake cheaters” will take advantage of disability accommodations unless we make accommodations way harder to get. God forbid we help too many people. Because money-rules and stuff. And god forbid we protect too many basic rights. Because it’d make things complicated.

  3. I will never forget what someone said upon seeing a picture of my son (having never met him), “He looks normal”… Really? What did you expect? So far to go and sometimes I feel we will never get there. Oh the wonders those who don’t get it are missing out on!

  4. My PDD-NOS 7 year old learned about Martin Luther King this year (there’s a song about civil rights/how he died, etc). Every once in a while he talks about MLK and how he died, and he’ll ask me why. I tell him about his fighting and dying for the right of all people being treated equally regardless of what they look like, skin color, religion, etc. And his reaction is ALWAYS to the effect of “I have brown friends” ( 😉 the literal frankness) in a tone of voice that says “what does color have to do with anything?”

    My DS is surprised, every time, that this kind of thing is an issue – and I seriously love that. It gives me hope because maybe his attitude isn’t just his and that this WON’T be an issue someday (soon, please!).

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