[image description: a red fire alarm box that says in emergency break glass but inside the glass instead of a handle to pull for the fire alarm there is a stack of hundred dollar bills.]
I’ve written a good bit about preparing your children for the world. It’s especially important if your child is Autistic to prepare them for the world with specific advice about how the world works. So often, we need to have things spelled out for us. We need step-by-step plans. We need to get a peek into the future and know what to expect. I know some of my Autistic friends are great at spotting patterns and protecting themselves, but I, as you probably already realize if you’ve been reading my writing for more than about two minutes, was not so lucky. I learned a lot about how abusive the world can be and I learned it in what they call the School of Hard Knocks. I’m still learning it. I still get knocked up against pretty hard by a difficult world.
Being on disability, I’m not permitted to have savings. I’m going to explain to you now why that is so dangerous. It’s going to scare you. It should scare you. I hope it scares you into action. The ABLE Act is great and will help a lot of people, but there are restrictions (and that’s why I wrote last year about the importance of saving every scrap of documentation of disability while your child is young.) The ABLE Act is a new law that allows disabled people to have savings accounts (a single 529a savings plan of up to $100,000, permitting donations of up to $14,000/year), to be used for specific purposes, without losing disability benefits. That’s huge and could affect nearly 6 million disabled people, although it’s only begun being implemented in a few states so far. But the catch is that you have to have a disability onset before age 26. And, more than that, you have to prove that date of onset and get the government to agree with your proof.
My age of onset is long, long before age 26 and I have documents from age 19 that prove it…or should. The government has looked at my paperwork, documenting institutionalization for the same disability I’m currently collecting SSI for having, and declared that it doesn’t count. So I can’t use the ABLE Act to build a savings account to save me in case of disaster and I can’t switch to SSDI Adult-Child benefits (which would increase my income and put me under a much less draconian set of rules than I currently live under on SSI.) I’m working toward becoming self-supporting, but I’m nearly 50 now and still barely earning any income. There’s a strong chance I may never achieve my goal of self-sufficiency and may never live at or above the poverty threshold.
But I digress.
Today I want to talk about why it’s so important to create a world where disabled people are able to have savings. And I want to start with a Reddit thread that’s in the process of going viral.
A friend on Facebook shared this link. I’ll give you the link but I’m also going to summarize it for you because it’s a long link (and I do recommend reading every single comment on it if you do go there. And I do recommend going there. It’s both instructive and amusing–that schadenfreudian amusement of watching an abuser in distress about getting what’s coming to him.)
My Girlfriend Elaborately Made Me Homeless
Here’s my summary of what transpires on that thread: A man hit his girlfriend. She went away for a few days but came back. He apologized. She accepted his apology but lost trust in him (as well she should have.) When they moved from their apartment to a nicer apartment owned by the same landlord, she gave him airy dismissals when he asked about signing the lease and he accepted them because he liked letting her deal with the numbers and money and stuff. She had good credit and his was trashed so her credit got them the apartment in the first place. He didn’t think much of it when he asked about signing the lease and she said, “oh, that’s all taken care of” or something equally breezy.
Fast forward and he’s getting angry again, they’re having “spats” (his word for it) in which the police arrive to settle things. Then one day he goes to work and comes home to find all her stuff gone and a lawyer serving him a document requiring him to move out within 45 days and not contact his (former) girlfriend. He’s distressed and outraged but can do nothing – she has played her hand well and he will be gone and she will get the nice apartment back and go on with her life minus one abuser.
People are, justifiably, applauding this woman’s bold move. She is, quite understandably, a hero in her own life story and a role model. She got out of an abusive relationship without putting herself at physical risk to do so. There’s just one thing: this smooth and bloodless self-extraction is not available to most people in situations of domestic abuse. The woman had a lot of resources available to her that Autistic adults often do not have. And one of the biggest ones? Savings.
This is why I keep telling you to work harder to extend the ABLE Act. It’s great that it helps millions of people. That’s not enough. This is also why I keep telling you to teach your children how to say no and mean it and back up their no with action.
I have a book coming out very, very soon. I don’t have a specific release date, but it’s teetering on the threshold even as I type. It’s called The ABCs of Autism Acceptance, published by Autonomous Press, and I have a whole chapter about the abuse that Autistic people cope with every day. The statistics are so huge, even my jaw dropped when I was researching it and I am hard to shock when it comes to the knowledge that Autistic people are vulnerable to victimization (yes, it’s chapter V in the book. How did you guess?)
Not having financial resources is one of the things (not the only thing, but a huge thing) that keeps us so vulnerable. Even with all my experience and all my knowledge and all my determination for self-determination, I still ended up in a situation in April of this year where I needed the police to come supervise as I left someone’s house to make sure I was able to leave with all my possessions and without being physically harmed. It could have been a lot worse than it was. And I was lucky that I already live in my van because otherwise I might not have even tried to leave, knowing I had no money and no place to go.
In the Reddit thread I’ve linked above, one person wrote a comment in which they included a link to a sort of “choose your own adventure” story about a young professional woman who gets trapped in an abusive relationship and an abusive job due to financial pressures. The story then “rewinds” and tells itself again with the young woman choosing to build a (pardon the language) “Fuck Off Fund” so that she doesn’t get stuck in a sexually harassing job and with a verbally and physically abusive boyfriend because she has savings. She has a minimum of $3000 savings, which is more than I’m allowed to have. The government would cut off my benefits if I had $3000 in savings and I’m not an up-and-coming young professional so that’s a pretty big deal for me. Here’s the story. I also recommend reading it, even though I’ve just given you a pretty good summary of what you’ll find there:
No matter what you call that savings account, it’s a lifeline. It’s a way out of abuse. Autistic people get abused every day: by romantic partners, by landlords, by bosses, by neighbors, by family, by roommates, by caregivers. The list goes on. We are incredibly vulnerable because we live in a world that has kept us incredibly vulnerable. So many of us live on disability income that functions under legislation that keeps us in a child-like state our entire life, stripping our autonomy and self-determination. Another large slice of our demographic are chronically underemployed, struggling to get by on minimum wage or less — and I’m talking about young people with bachelor’s and master’s degrees in this group. The super-successful among us who get held up as cultural icons (I don’t actually have to name their names, right? You know who I’m talking about.) are the exception, not the rule.
We Autistics deserve something better. We deserve a better life. And we deserve a savings fund. Sure, some people will fritter away their money like the first example in the “F*ck You Fund” article I’ve linked above. But for so many disabled people, for so many Autistic adults, it’s not a case of frittering anything away because we don’t even have it to start with.
When you are preparing your child for the world and preparing the world for your child, think about these things. No matter what future you envision for your child, make sure it’s one with an emergency savings fund and protected access to it — protected from victimizers who would try to take it for their own and protected from those who would try to deny your child access to it in times of genuine need.
And beyond that, educate your child to protect them from abusers. Teach them that no means no. Teach them to own their bodies and money and minds and lives. Teach them to be strong and proud. Whether they’re headed off to college and a career or headed into a life of round the clock support, teach them. These are scalable skills that can be tailored to any life, any life situation. The way I use my skills of self-protection as a traveling vandweller will look different from the way an Autistic university professor uses skills of self-protection and different from the way an Autistic living in a group home uses skills of self-protection, but we can all be taught how to own our power and defend our boundaries and protect our lives from the predators that all of us are going to encounter in our lives because Autistic vulnerability does not respect these apparent differences and strikes hard at all of us.
There is so much more I could say about this, but I have a lot to get done today, so I’ll just stop here. I encourage you all to discuss these things in the comment section. Share resources with one another. Get to know one another. I have a wide variety of readers, from fellow Autistic adults to parents of Autistic children and parents of Autistic adults to professionals who work with Autistic people and our families in many different capacities. Get to know each other and talk about this important issue and help all of us move forward when it comes to protecting Autistic lives without removing Autistic autonomy and self-determination.
Congratulations on your new website!
Thank you for the information on the ABLE accounts. I knew something about them, but now I realize that my daughter may not be eligible to have one as she was diagnosed with Asperger’s only last year when she was in her late thirties.
You are right about the abuse. Sometimes it’s subtle and sometimes so blatant that you wonder whether you are actually interacting with another human being. My daughter works at an agency that supports adults who have intellectual and physical disabilities. She’s been working there for twelve years. An administrator in the new management told her last year that she “doesn’t fit in.” My daughter gets along very well with the people who participate in the program (you know, the people whose funding provides management’s extravagent salaries) but she has also reported staff who have emotionally and physically abused them. That creates too many problems and too much paperwork for management. The most recent problem my daughter has encountered is this comment from her supervisor: “You don’t look autistic.”
There’s not much else to say except thank you for the time you spent reading my comments!
Oh my yes, one so many levels this post is a big yes!!!
My entire life until 8 years ago was one abusive situation/relationship after another. And of course I never had any savings, because even when I was making enough money to save up a bunch easily, I didn’t think to do that. I’d not learned that then. And as my Mom was autistic like me, she never learned that, just like she never learned how to avoid abusive situations/people.
Now of course I live on disability and am allowed at most $2000 dollars in savings, but it’s hard to save with the little bit I get. So far I’ve been living here, in this apartment, alone, stable for almost 9 years. I’m 52 and this is the first and old time I’ve lived alone and stable in one place in my entire life. My landlord over the last three years has been jacking up my rent by large amounts every year trying to force me out of my apartment, I fear this April I’m going to have to take legal action to avoid ending up homeless and living in my car. She’s known I was disabled since I applied for the apartment, and I’ve mentioned that it’s a violation of the law to force me out by raising the rent, but she tends to ignore my concerns.
So we’ll see what happens, and if need be, I’ll file for protection since Social Security did not give us a COLA last year…
Congratulations on the new domain, that is so cool!!!
I could watch Scnidhler’s List and still be happy after reading this.