Offer What Light You Can

Content Warning: I began my Reality Journal on March 7th, 2018. Astute readers might realize that, if we are almost to the one-year anniversary of the creation of that journal, we have already passed the one-year anniversary of its inspiring event. I can somehow concurrently not remember enough details of that night because of dissociation and have vivid emotional flashbacks and nightmares about what could have happened. I’ve tried to process that night in therapy recently, and I’m revealing more details by default in this post. Those details are dark, but they are in the past. Though I write about something horrible, know at least that it is not something horrible from my present. With the 9th Circle of Hell, I know I must be very clear about time or it could be confusing. Be safe when choosing to read this post. If you are not in a good mental place to read about the abuse of the vulnerable in 2018, please don’t. If you do read, please read to the end. The emotions in this post are not directed where they might seem from a cursory glance. Given that this post addresses the Disability Day of Mourning, please also be respectful that, though the worst possible outcome of that night in 2018 did not happen for my family, it did happen for others. My nightmares are others’ realities. The Disability Day of Mourning honors those realities.


Dear Autistic Self Advocacy Network,

I never knew your Disability Community Day of Mourning for individuals who died at the hands of their caregivers existed. I couldn’t mark it on March 1st because I only learned about it from another blogger afterward. I only learned your group even existed through other bloggers, and I’ll admit that I have had too awful of a prior year to have had the mental capacity to remember your organization existed. Until today, that is, when I saw that post about how 650 disabled individuals have been murdered by their parents in the past five years. Then, I had to write.

I’m neurodiverse, albeit of a cousin type to ASD. I’m a trauma survivor. I lived my “child” almost becoming your 651st in early 2018. Or, so I thought when I first read “caregivers” initially on that other blog, and I assumed that it included abuse by state agencies.

I’m a “parent,” even though I’ve never given birth. That’s what legal guardianship of a disabled adult means, though I’m only a scant few years older than my sibling in age. Yet, if I and my co-guardian hadn’t uncovered the medical and other abuses that could so easily have turned a Crisis of 2018 into a forever tragedy, I wonder if my sibling would have been remembered on your Day in 2019? Reading the source description, the Disability Day of Mourning is only for victims of their own parents’ abuse.

I can assure you that my sibling will never be the victim of any abuse at my hands. My co-guardian and I, had we been too late last year, would have merely been spectators, not perpetrators, of a tragedy beyond the scope of comprehension of any rationale, caring mind. We’d have merely been the ones who fought the indifference of an entire state and, in the end, failed spectacularly anyway. We didn’t fail in 2018, but I still have nightmares that someday – that the next time – we will. If we fail to stop the system from destroying life, is it on us or the system? Would that life be mourned on your Day? I don’t know, but I know forever after that PTSD would look at your Day of Mourning and blame myself. PTSD would forever tell me that failing to save someone is just as bad as being the perpetrator myself.

But it isn’t, or, at least, so says my therapist. It isn’t, and there are so many victims that aren’t on that list because their “caregiver” wasn’t a parent. That 650 number, heartbreaking as it is, doesn’t yet mourn them.

I looked at that 650 number and the epidemiologist in me – and the “parent” too – scoffed that it was impossible. It was impossible for that to be accurate. It’s too low. It’s too low for all the deaths in group homes dismissed as “tragic accidents” or the inevitable results of “self-injurious behaviors.” It’s too low for the medical emergencies – both natural and manufactured through medically abusive coercion and control – that even the most dedicated parents couldn’t have prevented for their nonverbal charges because they lacked the knowledge to know how to ask about it and the resources to turn to when they first learned the hard way what they never knew that they never knew. It’s too low for those “natural” biological failings of the disabled body that “happen sometimes” in “at-risk” groups – but that truly could have been prevented if their doctors had shown the same level of care to their disabled patients as to their abled ones. If those doctors had prodded just a little further into questions about the most serious side effects of serious psychiatric medications or into the physical illnesses lurking behind the “psychiatric” manifestations of disabled behaviors that are oh so easy to dismiss as “just” behaviors.

I knew immediately that number was too low because state oversight commissions don’t care. Because they say things like “if you can’t see the print matching the boot of the abuser” that it was probably just “those kids” being “those kids.” They say things like “those kids.” If they ever acknowledge that medical, psychiatric and crisis care is among the worst of the worst of the already horrible U.S. mental health system for children under 18 with severe intellectual or developmental disabilities – which they usually only do at the loss of a lawsuit – they continue to forget that there are then effectively no services at all for I/DD adults. And children under 18 do, like clockwork, turn 19. In too many states the “Quality Assurance Specialists” only ensure that providers stay open at any cost – including enabling their abuse actively – because there aren’t enough providers anyway. To create more spaces in homes with the weight of lawsuits about years-long state waiting lists breathing down their backs, state QA will let practically anything slide within those spaces just to be able to claim there are spaces at all.

I knew immediately that number was too low because how could any accurate statistics about the degree of abuse in state psychiatric facilities, in foster care, in group homes or in halfway houses ever be reported when so many states don’t allow public reporting of those abuse stats at all? If I could have forced the 9th Circle of Hell to release records of the number of abuse complaints against providers in that state, I’d have done so long ago. The state is so completely not transparent that’s there is seemingly not a damn thing I as a “parent” can do about it…

I knew all those reasons that 650 had to be too low the moment I saw it on another blog. What I didn’t, unfortunately, know was that, at its core, that 650 is also simply too low because it represents only the number of family caregivers responsible for those deaths. How much worse that number is now that I know that many parents alone do that before we ever bring the state into it? How could any parent do that? I am legally a “parent,” and I would never harm my sibling.

My sibling requires a level of care beyond that which my family can provide medically and financially without state assistance. I fear, thus, that my sibling will someday end up the victim of a state “caregiver” no matter how hard I fight. I’m a “parent,” and a parent’s worst fear – especially if they are a trauma survivor themselves – is that next time they won’t be there in time to play doctor, to play lawyer and to replay the nightmares of almost not saving someone forever because they were already too late.

I’ve played all those roles I mentioned to address abuse by state-funded agencies of the disabled in just the past year alone. I wasn’t the abuser, and I bear the emotional scars, too, from the state’s indifference. I don’t know if I truly changed anything. I know the fight is far from over, as the horrible laws of the 9th Circle of Hell are also so very common among states that even forcing it to be transparent would only represent a drop in the bucket. I’m a “parent,” and I fear that someday because of systemic abuse I won’t be. I hope you wouldn’t have blamed my co-guardian and I had we been a few hours too late on a fateful night in 2018. I hope you wouldn’t have blamed us if last year the world had lost one more of its disabled lights. But, know that I still blame myself for what could have happened, no matter what my therapist says.

I’ve played a lot of roles as a “parent” trying to keep my sibling safe. The worst of those roles has been a victim of a system that didn’t care alongside. I legally took responsibility as a “parent” while a young adult myself. I learned quickly how often paid caregivers don’t truly care at all about those in their “care.” Your stats are so horrible all on their own, and yet, by your own admission, they still don’t even begin to encompass the Hell that is systemic abuse by state-funded providers. I don’t know where to start to stop that. I don’t even know what advocacy groups are even talking about that un-mourned abuse epidemic.

I’m not mad at you for your omission. You must start somewhere. You are listing stats and drawing attention towards abuse of the disabled, and that’s more than I have seen anywhere else. I’m sure you would include estimates of the prevalence of abuse – and preventable deaths – in state agencies if you knew how to obtain them. I assume that – since I have tried so very hard to estimate reasonable population stats for the tragedy in state-funded care agencies and been stymied by state obstruction – that it isn’t any easier for formally incorporated advocacy groups.

I’m neurodiverse. Any advocacy for neurodiverse safety, self-determination, and fundamental selfhood is a step in the right direction. I’m not mad that your 650 statistic only includes direct familial abuse, or I should say that I’m not mad at you. (Those abusive families are another story.) Familial abuse is too real for too many disabled individuals, just as abuse by state agencies is also too real. I’ve been hurt myself in the process of trying to protect my sibling – and I’ve also been hurt simply for being neurodiverse in a neurotypical world. Saving anyone is a light in the darkness, and it’s something I want to help with.

I’ve played many roles in my life. I want to play the one that has been so frequently denied to me by the 9th Circle of Hell: Advocate. I’m not mad at you for not currently including estimates of another tragedy at the hands of state providers in your Disability Day of Mourning. I do want to help fix that in the future if I can. You see, in my daily life, one of the other roles I play is the data analyst. I don’t know the numbers not because I don’t know how to estimate population statistics. I know how to do that. I don’t know the numbers for that type of abuse simply because states can conceal them. Help me to find a way to get more data and I’ll bring to bear every ounce of training that I have – which is a lot since ADHD folks can rock their special interests, too, to the graduate degree – to help you illuminate the horrors that are as yet unknown as well as those rare horrors that do make the presses. I don’t want to yell at you for the fact that I fear for my sibling’s safety but know there’d be no place for him on your Day of Mourning if I fail in the next iteration of my personal Hell. I don’t want to call you out for that. I want you to call me.

I want to work with you. I want to find a way to use my data skills to reveal the truth behind those “tragic accidents” that are even more tragic because they weren’t really accidents at all. I want to help what “couldn’t be helped” and ensure that those who have already been lost are found again.

And, of course, when you do create your Day of Mourning for victims of the state as well as the family, I foremost want to ensure my sibling is still never remembered on it because my sibling remains alive and well.

I felt so lost and alone in 2018. I never want any other disabled individual – or parent of a disabled individual – to experience what we did again. I have both the lived experience and the data savvy to instinctively know that your 650 statistic is so very, very wrong both because it is too low and because it is too high all at the same time. And, I instinctively know that if advocates don’t band together, it will only grow higher.

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.


4 thoughts on “Offer What Light You Can

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