It’s Becoming Very Real, That Sad World

Lydia Wayman

I went to a Town Hall meeting today regarding the cuts to the Pennysylvania Department of Public Welfare budget, which means cuts to Medicaid.

And so many people were saying that the results of cuts to Medicaid services for kids with autism (because probably 75% or more of the people there appeared to be parents of kids with autism, along with clinicians who work with people on the spectrum, and autistics themselves, like me) would result in the necessity of long-term institutionalization. In essence, sure, you’ll save the money now when we lose services because we can’t afford the copays, but it’s going to come back to bite you when we need to be institutionalized one day.

I read my piece in front of all those people and made my point, which was basically the same as what I just described, too. They took my letter to show to the legislators.

It made me think, just now. What a sad world it would be, no? And it’s becoming very real, that sad world.

I’m not sure of the statistics, but surely the majority of people with autism currently reside in the community. Many adults live with their parents or in group homes. Some of us live semi-independently. We work, shop, exercise, and play in the community.

What if we went back to the days of the 1950s when people with disabilities were shut away somewhere?

We’d eat in the institution.

We wouldn’t shop.

We’d exercise in the institution’s hallways.

We’d play in the common room.

The world would lose so much of its color, its differences, and its interest. People with disabilities are people, first and foremost. I’m really not so different from you and yours. Really, I’m not.

And this is my world too! I belong here. I don’t belong shut within four walls. I don’t deserve to lose my rights. I have a voice, a mind, and above all, a heart. Have you given up hope on me so soon, that I won’t work and won’t make a place for myself? I’m only 23, and I’ve only had services for less than a year. I’m light years away from where I was in April when I started Waiver services. The goal of my services is increased independence, and I am determined to get there.

One lady at the Town Hall Meeting said that her children, her brilliant, beautiful, and autistic children would grow up and make millions. She has no doubts about that. Does the state really want those kids, left without services now, to someday take their millions elsewhere?

But more than that (though, as we know, money talks)… do you really want me to take my intelligence and quirkiness and insight elsewhere, or anyone else with autism? This is our world too.

We belong here.

Let us speak our minds.

Hear our voices.

Listen to our hearts.

What a sad, sad, world it would be.


This essay was originally published at