Famous stories have been written about parents who had to make painful choices, to keep their children safe. Sophie’s Choice, the blockbuster 1980s film comes to mind. The female protagonist must choose between her two children, forced by a Nazi guard for the purposes of his own amusement. She is made to choose only one child to escape from the train to a concentration camp. (Sophie’s Choice clip) It is hard to watch. It’s like she’s given a test but crumples under the pressure. A non-hero

I would like to think that I would never make such a choice. I would not permit someone to have power over me or my child, to make me do something — to hurt a psyche to save a body.

But life is complicated.

It’s true that everything that Edward and I have done in the past five years on behalf of Owen has been with the purpose of helping him claim his voice. We have pushed back on the nay-sayers, tried to manifest the intelligence that hides under his dysregulated body. Every effort of the organization Real Voices of Philly is for that same purpose: to help ALL non-speakers, as many as we can connect with, to access educational and cultural opportunities. Even if that voice is via the criticized and admittedly imperfect method of pushing through reverse pressure to point at letters on a card or to press keys on a keyboard, to make their thoughts heard.

And yet this month we will ask Owen to betray himself. We have learned that in order to get a waiver for support from the state of Pennsylvania, Owen must subject himself to an IQ test, the soul purpose of which is to prove him incapable of higher thought. Only an autistic who is mentally incapable can receive this financial aid.

I hate it. I hate this ignorant, demeaning law, that forces non- speakers to either misrepresent themselves or to not receive the governmental support that many desperately need. I hate the bullying, officious governmental system that can control lives this way. But the law has the power. Owen and his friends have none. Intensely frustrating as it is the situation will not change quickly. Edward is handling it; I could never bear to do it.

Why need an autist be mentally incapable to receive assistance with their physical disabilities?

Getting this waiver will allow Owen financial support from the federal government, although not enough money to cover his basic needs even for a low quality adult home. Our lawyer says we absolutely must do it. This can provide the basic care, and we can focus on the quality of life stuff, so that he is not medicated into a stupor, left standing in the corner of a group home, twisting plastic in an agony of boredom, 24/7. We already experienced some of this, in the adult daycare Owen endured Maryland. I thought the people were nice… How could I know? And I didn’t know what else to do.

Owen is lucky that we are able to provide the financial support that will make a difference.  We plan to provide him trained communication partners (CRPs), that education will continue all his life, including trips to the art museum as well as the hikes that he loves. And hopefully it also provides oversight to prevent abuse or negligence that is rampant in programs and homes.

We have talked about creating a home for a few non-speakers, a group of young men who share Owen’s passion for learning. And then, once that is going, I want to do it again. And again. And again.

Maybe creating safe worlds for these special people — really beautiful homes for people usually assigned the dregs, lives of unexpected cultural richness and dignity — will remove some of the bitterness I feel, at being forced continuously to play by rules that are false measures of reality.  Let us break those chains created by ignorant “specialists,” and blind “experts,” chains that hold bright minds in bondage. (Read the novel In Two Worlds by Ido Kedar. You will be glad you did).

Owen writes: “It is sad that we have to lie to get the help we need.”

Thank God for those who are curious, who ask questions, who want to know. Because the true measure of a human being is a difficult measurement to get.

Post Script:

This post is dedicated to my uncle, Robert A. Smith of Glenview Illinois, who passed away on January 16, 2024. He was a man who looked for a way to connect with people, to lift people up. It seems that he tried to make the world a little brighter, either by a word or deed, for anyone he came across. I didn’t know my uncle very well, and I would have said that we were very different sorts of people. But as I finish this post, I recognize him as a mentor. Bob Smith’s generosity, his rather intense commitment to making the world a better place, and his willingness to roll up his sleeves and “do something about it” are a powerful role model in POSSIBILITY. With gratefulness — I had no idea how much I owe you until you were gone.