What are you looking at?

Getting into my red Ford Taurus, I dumped my purse onto the passenger seat and turned the key in the ignition. It whined, but wouldn’t start, so I turned it a few more times – each time growing more and more frustrated and despairing. “Start, you mother fucking car, START!!” Pumping the gas pedal frantically, I continued to turn the key, causing the engine to screech incessantly – until a neighbor, Adam, stopped and said, “You’re going to flood the engine if you keep giving it gas.” He lived on my floor with his boyfriend and worked at a local theater. “Let me get my jumper cables,” he said, “I’ll be right back. I got out of my car and kicked the driver’s side door, “You piece of shit!” Someone walking by on the street looked back at me as he kept walking, shaking his head. While I waited for Adam, I had a moment to think about my day, which led to reflecting on what my life was now.


Disability is Diversity

A lot of times when I tell people that my daughter has cerebral palsy (CP), they respond with all sorts of reactions and usually seem to feel really bad about it. One person recently meant to be nice, but said she basically wouldn’t be able to get out of bed in the morning if that were her. We actually laughed about it because it’s so far from our reality. Society unfortunately sees disability as a tragedy or problem, and that you can’t live a good life. That is so far from the truth. My daughter has had a great life. It has been rough at times, and a lot of it is because society doesn’t get it. As a parent, what has been most difficult is the lack of support, especially as a single parent. It’s been the two of us against the world. The attitudes out there are suffocating. And we know from experience that community support is essential. That’s why it’s important that we promote accessible, affordable healthcare. There are community programs that are critical to living a quality life with opportunities. The reason my daughter has had a good life is not because it’s been easy, but because despite all the obstacles, she has been able to do what she wants and become the person that she is meant to be. We both appreciate all the work that people have done to create a more inclusive society, and we talk about this a lot. Of course there is still a long way to go and a lot of it will come from changes in perception and attitudes. Using a social model, we may challenge barriers, rather than focus on the individual as somehow less human. Every one of us needs different types of community supports, whether or not we are aware of what they are. We just haven’t typically expanded support to accommodate disability. We change buildings now, like doorways and ramps. But not all disabilities are physical and some of the newest changes have been in technology and content development. Society has typically served a very narrow segment of the population and that is part of the reason that society is comfortable with only a subset of certain diversity spectrums. We can open our minds to consider much more variety of human experience. Then maybe we won’t feel so bad when someone else’s life is different from ours.

Invisibility Cloaks: Social Contracts We Make with Caregivers


Let’s not move for a minute.

It will take only a minute.

There you go.

You can’t feel it, but now you’re wearing an invisibility cloak.

You are now completely invisible.

Even your humanity is totally hidden, which is what we want.

And you won’t remember that you signed a contract with other human beings.

You are subservient to them, but will be called “family.”

That’s an emotional trap to keep you here. But it’s a one-way relationship.

Now let me tell you about this invisibility cloak.

Here is how it works.

When you’re hungry, we won’t know it.

That would just make us feel guilty and that’s no fun.

When you start to cry, we won’t see.

Not even when you weep.

Your breath may be faint, soft, like you’re not even there.

Almost inanimate like a statue you are.

To sleep, to dream at night, we will be unaware.

It’s like you don’t exist to us.

When your heart breaks because you can’t be with your children, we won’t have to be uncomfortable.

Because we can’t see you!

Life is good for us when you’re invisible!

Your humanity is not in our faces to reflect what we are doing to you.

We will never know how we killed you in the end.

You will silently slip away from within your invisibility.

Like a vapor into the wind.