Susan's Blog

Thursday, March 28, 2019

Albert Camus’ Search For Autism Housing

As an autism mom trying to build Nat’s future, I ought to know by now that it is always darkest before the dawn, that there’s a light at the end of the tunnel. How many times do I have to learn that? The problem is, because this is real life, real people, I am always suffused with the fear that this time the bad stuff is going to last. And then, after a terrible phase of hopelessness and anger, of digging in the dark caves of despair, I stumble upon a tiny idea that is like a crack in the rock. I then test it out with a deluge of emails to my mentors. I latch onto their kind and wise responses and I find the way out. But still, I feel like an idiot, like everyone in the autism community is laughing at me and my credibility is draining away, all because of my eternal optimism.

But maybe I can take heart from the story of King Sisyphus. My viewpoint of Sisyphus is actually informed by Albert Camus’ interpretation, which I want to describe from an excerpt of Camus’ The Myth of Sisyphus that I studied in college, and rediscovered on this NYU website.

The traditional story of Sisyphus is told thus: That Sisyphus was a wily ruler who did not obey the gods and tricked the Underworld into letting him leave Hades when he died. He had apparently made promises to Persephone and was allowed to go back to the world of the living provided he kept his promise. Camus writes, “But when he had seen again the face of this world, enjoyed water and sun, warm stones and the sea, he no longer wanted to go back to the infernal darkness.” So messenger Mercury came along and threw him back into Hades, where he was condemned to push a huge rock up a cliff, only to have it roll back down.

Upon first reading, this fate is the epitome of meaningless. But Camus sees it differently. He views Sisyphus as effectively turning despair on its head by doing the work. He writes, “Sisyphus is [actually] the absurd hero…[For] where would his torture be, indeed, if at every step the hope of succeeding upheld him?” In other words, Camus discovers hope in the act of pushing the rock. It is that hope, and the purity of the work itself that Sisyphus is engaged in, that actually renders him triumphant. For while toiling he is merely a thing of action, of moving-towards. An example of silly human, all-too-human hope. And in feeling the hope of action, in mindlessly, dutifully doing his work of pushing the rock, he has actually beaten the gods. He has found his dignity, which the gods had hoped to remove.

In my darkest moments of dealing with the reality of Nat’s distant future, I try to take hope not only from my mentors, but even from the detractors. The monolith of The Bureaucratic State and Federal Agencies (the gods in Nat’s world) with their oft-time absurd rules, is what stirs me — and hopefully you, the planless autism parent or Self-Advocate — towards the greater good of struggling for your guy/yourself. The ups and downs of the planning, the piecing-together of the various parts of your vision (finding the funding, finding the fellow residents, finding the staff, finding the kindred spirit families, getting them moving, finding the house, the “‘partment,” the farmstead, the intentional community) even the subsequent falling-apart, all of these are your noble work. And like Camus’ version of Sisyphus, it is in that work itself that you, the ever-struggling autism planner, (whether parent, guardian, sibling, or Self-Advocate) are in fact triumphant.

Why triumphant? Because your efforts — though those interlocking task-parts may be conscious — are driven by your unconscious feeling of optimism and love. So it doesn’t actually matter, on some level, what your results are. I mean, of course it matters because no one wants their plan to fail, to see their loved one at the bottom of the cliff next to that stupid boulder. But remember, the human condition guarantees nothing. We are not entitled to that rose garden. The paths of glory lead but to the grave. But I think Camus is so right, that the struggling-towards is noble, if for no other reason, that our labor creates a body of work for you and others to learn from. Your “failed project” gives shape and structure to the chaotic swirling atomic darkness that other families face by showing them What Not to Do. It is this lesson in “Not” that then gives birth to the tiny new epiphany, the creation of What Might Be.

My bottom of the cliff, my foundering in the darkness of that hopeless cave (where I found myself just days ago) will always lead me to that possible way out. Even if the ladder, the climb up, only leads me to fall again at some point, there is that moment of the idea, the new plan informed by my new knowledge of What Not to Do, that also counts. Because in real life — after all, we are not actually in Hades — it may be a very long time between reaching the summit, and falling again. Your guy might find a home for years, decades! There is always the (foolish and possibly brilliant) path upwards, over and over again.

(Nat, 23, with Dana, a good friend from his first of two adult group homes)



You are a brave warrior and advocate. You keep me alive and encourage me to strive for the best for my son. Thank you for that. He is living in his own apartment with caregivers when we can find them. This is the biggest challenge of all. How do we find and retain trustworthy, compassionate caregivers? If only we could clone ourselves and be there for our adults as long as is needed.

— added by jane dolan on Thursday, March 28, 2019 at 1:06 pm

You’re one of my mentors, Jane!

— added by Susan Senator on Thursday, March 28, 2019 at 4:53 pm