“We Are Not Diseased”

Famous Autistics Word Cloud 5

I’ve been feeling pretty good lately, and I’ll tell you why. My oldest daughter (14) did something that impressed me no end. Her Health class has been studying mental illness for the past couple of weeks. You know, the usual teenage awareness stuff: depression, anxiety, anorexia, suicide. It was all going pretty well, too. No negative blowback from my girl, even though she’s keenly aware of her own diagnoses.

But then the class turned to ADHD, and this happened. Introducing the lesson, her teacher said something like, “Now let’s look at another disease, ADHD.” This prompted my daughter (who has ADHD along with autism) to raise her hand. “Excuse me,” she said, “but ADHD is not a disease. I have ADHD, and I’m just fine.” The teacher, caught off guard, apologized for having misspoken, and then moved on with the lesson. Pretty impressive, wouldn’t you say? She definitely deserved an attagirl for advocating like that.

However, when she told us the story that night, I could tell she was more upset than she let on at school. Because she tries hard to be good in class, she kept her response there short and polite. But she let it all out at dinner. “We’re not diseased,” she declared, pounding the table with her fist. “We’re different, not less. Why do people do this to us? I can’t believe he said this. And he’s a Health teacher. He should know better!”

I couldn’t agree with her more, and I told her so. I also told her how proud of her I was. It was wonderful to see that my daughter has her head screwed on straight and doesn’t tolerate nonsense. She gets that ADHD—and autism, for that matter—is nothing to be ashamed of. She gets that she’s not diseased or locked in to a life of limitations. She has hopes and dreams and ambitions, and she’s determined to accomplish them—no matter how much BS she has to deal with along the way.

A Quick Pivot.

All of this got me thinking about recent events, especially the mass shooting at Umpqua Community College in Oregon. News of that attack seemed to be a kind of tipping point in the gun control debate. With President Obama taking to the podium yet again, this time sounding exasperated and even disgusted, people are talking about gun violence more seriously. And that’s a good thing.

But all this attention has its down side. For every time another mass shooting occurs, talking heads on TV and the radio pivot almost instinctively to the topic of mental illness. They decry the sorry state of mental health care in the country, and suggest that if we only did better at this, massacres like these wouldn’t happen. And when I hear stuff like this, I cringe. 

Stigmatizing the “Other.”

Of course, I’m all for improved mental health care, but there is no real science linking mental illness to mass shootings—or to shootings in general. In fact, those with mental illness are far more likely to be the victims of such catastrophes than the perpetrators. As The New York Times recently reported, “Fewer than 5 percent of gun crimes are committed by people with mental illness; fewer than 5 percent of people with mental illnesses commit violent crimes.” And so I cringe every time mental illness enters the conversation. I can already feel the damage that it will do to people with mental illness.

  • I see the way it stigmatizes them.
  • I see how it turns them into a class of “others” who are alien to “normal” people and inferior to them.
  • I see how, intentionally or not, this kind of talk stirs up fear, which makes it harder for the people to find the acceptance and help they need.
  • I see how it presents them as weak and out of control, when quite often they’re stronger than their peers—with the strength that comes from adversity.

Something else troubles me about this conversation, though. Whenever mental illness is brought up in the context of a mass shooting, autism follows fast on its heels.

Mental What?

I commented on this back in 2012, when MSNBC host and former Florida congressman Joe Scarborough insinuated that James Holmes, the Aurora, Colorado, theater shooter, had autism, and that this was a major reason for his attack. Scarborough’s comments prompted a huge outcry, and he later issued a semi-apology. But it was too late; the damage had already been done.

But now it has happened again. Not long after the Oregon shooting, a Facebook page popped up called “Families against Autistic Shooters.” It was vicious and hateful—and more than a little ill-informed. Fortunately, the page didn’t last very long. But the fact that it showed up at all demonstrates that we still have a lot of work to do.

The speed with which people glide from mental illness to autism is as confusing as it is disheartening. ASD is not a mental illness. It just isn’t. It is a neurological difference (disorder if you must) in which the autistic person’s brain is wired differently from the typical person’s brain. But it’s not an illness. You can’t control it with medication, as you can control OCD or anxiety. You can’t shock it away with electrodes as you can do to severe depression. You can’t “overcome” it through talk therapy or yoga or meditation. You can’t even pray it away. It just is, and the best thing you can do is make room for it.

Words Matter.

I’m not saying that everything is rainbows and unicorns for autistic people—especially those with more severe manifestations of the condition. But let’s not call it an illness or a disease. That’s where the word cloud at the top of this post comes in. It’s a list of famous, successful people, all of whom are autistic. Ask any one of them, and I doubt any one of them would call themselves mentally ill. And they shouldn’t.

Words matter. They tell you what something is—and what it isn’t. If you call a cat a fish, and try to put it in a tank full of water, you’ll be doing an injustice to the cat. (You’ll also end up a bloody, scratched-up mess.) If you call autism a disease and treat it like a disease, you are doing something very similar—an injustice to autistic people. For calling it a disease naturally opens the door to discussions about cures. And that can get pretty dangerous. Just ask the people who have been subjected to bleach enemas and chemical castration in the name of a “cure” for autism.

If you accept that autism is a difference and not a disease, you’ll treat it differently. Instead of spending your time and money looking for a cure, you’ll try to help autistic people navigate a neurotypical world. You’ll dedicate yourself to educating the public about the gifts and talents that autistic people have to offer, as well as the challenges they face. You’ll make it easier for others to accept autistic people for who they are, and you’ll work to eradicate stigmas and bogus information related to it. And that’s how you make autistic people’s lives better.

Lighten Up.

So lighten up on the autism stuff. People with autism already have enough to deal with. Don’t make them scapegoats as well—unless, of course, you want to deal with my daughter.

“I’ll Miss the Kick-Ass Bitch”

jail-cell-bg

The following depiction of a homeless woman with mental illness was posted by my brother on Facebook a couple of days ago. It was so moving that I thought I’d share it with all of you.

A bit of background: My brother is an attorney in the public defender’s office in the suburbs of Baltimore. He acts as legal counsel for those who cannot afford their own lawyer. A good portion of his clientele are drug offenders. Many of them are homeless. Many also suffer from mental illness. And he’s there to make sure they get the legal counsel that is their constitutional right. It’s a job he has had for decades, and he relishes it. Anyway, here’s his story. I dare you to read it and not be moved.

“I Need Help!”

A long-time client of mine who became a dear friend was killed in a hit and run homicide. She was chronically mentally ill. Her illness eventually forced her mother to put her out. She kept coming back to see mom. After a few days, things would get out of hand. Her mother, understandably, had to get a protective order to keep my friend away.

She was on disability, but that paid only enough for her to rent a room in someone’s house. That always ended badly. The police were called. She went from one shelter to another. Again, it would work out for a while, then she would run out of her meds or lose them or have them stolen. She’d be asked to leave. They would eventually ban her because of her behavior. No medication always led to bad things. So my friend would eventually end up homeless. Alone. It was hard for her to be around people. But when everything was under control, strangers liked her. She had a genuine and open smile.

Not too long ago, I was visiting a client who was housed in the same unit as my friend was. She had to be locked in her cell because she had acted up. I heard her screaming louder than anyone could bear to hear, “I need help.” It went on for so long that I had to cut my visit short.

The last time I saw her, in a holding cell just before she was released, she told me that all she wanted to do was hug her mother. Just once. Now, my mother isn’t here to hug. I can’t imagine knowing that mom is not far, but she genuinely needs the law to keep her daughter away. Only one hug.

She died alone. The coward who hit her just kept on going. She was homeless. She was disposable. She was invisible. She was so funny that tears would literally stream down my cheeks when she got on a roll. She told me that when I needed help, the kick-ass bitch (her) would straighten things out. She was a human being. She was my friend. She was a human being.

She died alone on the street.

She was killed early last Monday morning. I found out about it Tuesday afternoon. Wednesday morning, it hit me like a cyclone. Spun me around. I remembered that a friend always says Mass on Wednesdays near my office. I met him in the parking lot, sobbing. He asked the people there to pray for her. They are a small group of retired nuns. Some in their eighties, a few over ninety. They will pray for her. I will pray for her. I’ll miss the kick-ass bitch.

Homeless, Hopeless, Helpless.

It is a sad fact that many people with mental illness end up like this woman—homeless, hopeless, and helpless. Disposable, as my brother said. So many end up in prison because they have nowhere else to go. In fact, there are those who purposely commit crimes so that they will at least have a shot at food and shelter. That’s how low they have fallen. That’s how much society has failed them.

I have written before about my children having comorbid conditions along with their autism: OCD, anxiety, and the like. These are mental illnesses, plain and simple. The only difference between them and this woman is demographics. I make a decent living. Katie and I are able to provide a stable, loving home environment where they can grow and thrive. We make sure that they receive the medical and psychological care they need so that they have a good chance of living independent, self-sufficient lives. Of course, none of this is a sure-fire guarantee, but the odds are significantly better.

Many, many people are not so lucky. They are the forgotten, the ignored, the abused, the ragged people living on the margins. Thank God for people like my brother—true advocates and servants who are committing themselves to helping these people as much as possible!