[content note: this blog essay mentions poverty, lack of adequate support, mental health issues, and sui*]
People talk about independent living like it’s a universal goal, a sign of success. They measure it in rent payments made on time, meals cooked in a kitchen, and the ability to keep a 9-to-5 job. If you can check all the right boxes, you’re independent. You’re thriving.
Except I live independently, and it looks nothing like that.
My independence doesn’t come from holding down a traditional job, cooking in a standard kitchen, or living in a house with four walls and a roof. My version of independent living means surviving in ways most people wouldn’t even consider. It is so outside-the-box because a box is dark on the inside, and living in darkness makes me sick.
Surviving by Refusing the Box
For me, living inside four walls without enough light isn’t just uncomfortable—it’s dangerous. Because I have Non-24-hour Sleep-Wake Syndrome, my body is tied to the sun in ways that most people don’t understand. Without sufficient (read: huge quantities of) natural light, my sleep schedule unravels. But it’s more than just insomnia or trouble sleeping. Without near-constant, daily exposure to daylight and dark nights, I become desynchronized, exhausted, isolated, and lethally sick.
So I designed my life around that reality.
Instead of forcing myself into an apartment with windows too small to be of any therapeutic value, I made my home in a minivan with uncovered windows, where I can wake with the sun and see the moon every night (though I’m currently forced to park in the middle of urban light pollution). Instead of trying to squeeze into an environment that harms me, I built an environment that mostly works—one that moves with me, one where I control how much light I get (sadly, at the cost of controlling how much darkness I get), one that doesn’t leave me trapped in a darkened room because laws require walls and a residential address to exist as anything more than a marginalized outlaw.
Most people assume I’m struggling in ways other than the actual struggles I’m coping with. Often, they see my solutions for my struggles and decide the solution is the struggle and think they understand my life. They see my minivan and my unconventional life and think I must be failing at independent living. They refuse the support I need, insisting that they have to help me live in a dark box before they will support me. I have to agree to become more disabled before I can get disability assistance beyond a small monthly check and Medicaid I rarely get to use.
I designed a life that protects my physical and mental health.
I adapted in ways that no system would ever have suggested, because systems are built for non-disabled, housed, workers. The only people who seem to get access to the kind of housing that would actually promote my well-being instead of killing me—plenty of windows, sunlit rooms, natural surroundings—are those who can afford luxury architecture. But I refuse to believe that only the rich deserve to live in ways that support their health.
Why Am I Considered Independent When I’m Dying, But Not When I’m Trying to Stay Alive?
Despite all of this, I still can’t get the support I need.
If I lived in a dark, windowless apartment, crashed out from exhaustion, unable to function, dying from illness that goes into remission when I live in the sun, I’d still be considered “independent” in the eyes of the system. If I were rotting but inside a socially acceptable structure, I’d qualify for help.
But because I problem-solved my way out of the N24 trap, I’m told I don’t qualify for anything.
I’m still poor.
I’m still disabled.
I’m still struggling to find meaningful work that doesn’t destroy me.
But I live in a way that keeps me alive, and because of that—as well as the overall “function level” other people have decided I have (and punish me when I fail to live up to my assigned function level)—I am excluded from support.
Agencies look at me and say, You don’t fit into our programs. Vocational Rehabilitation has turned me away twice now (in Kentucky and in Idaho) as too disabled to help. Other agencies won’t help me because I have college degrees instead of intellectual disability.
They don’t know what to do with someone who is both struggling and succeeding in the balance of my life. They don’t understand that just because I’ve found one or two solutions, it doesn’t mean I have all the solutions.
They tell me I look like I’m doing “fine.” Either they aren’t looking closely enough, the ways autism looks can be deceptive, or both.
I’m not fine.
And I’m not the only one.
It’s Not Just Me—Most Autistic Adults Aren’t Getting the Help They Need
A 2019 study in the journal Autism found that autistic adults report far more unmet support needs than the general population . But here’s the kicker: even though autistic people are at much higher risk of depression, anxiety, self-injury, and suicide, we are less likely to receive mental health care or support services.
(And it’s a vicious cycle, since the study found lack of adequate support increases depression, anxiety, self-injury, and suicidal ideation and completion.)
So many of us have been told we’re too independent to qualify for help but too disabled to actually function in the world as it is. One person in the study summed it up perfectly:
“I feel ‘lost’… I am too high functioning for most autism programming, but not neurotypical enough to function well in conventional work and social environments.”
Another participant described being actively suicidal but told to wait nine months for help. Another was told that because they didn’t have a co-occurring intellectual disability, they weren’t eligible for services at all .
They were expected to fail in the right way before they could get help.
Just like me.
Independence Shouldn’t Only Mean Doing Everything Alone
I’m tired of living in a world where you have to fail in a way the system recognizes before you can get help. Where you have to be miserable in the right way to qualify for support. Where only the wealthy get to design their lives around their actual needs, while the rest of us are expected to just suffer through it. (Or become outlaws, like me.)
Independent living shouldn’t mean struggling alone. It shouldn’t mean being punished for figuring things out. It shouldn’t mean having to choose between a life that works and a life that qualifies for help.
I built a world that preserves my health and keeps me alive.
That should count for something.
That should be enough.
My necessary self-accommodation should not bar me from the external support I need, to move from surviving to thriving.
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