Autistic people and suicide.

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I have heard of two autistic people, one I know, and one I don’t, attempting or thinking of attempting suicide recently.

I remember a few years ago hearing that an autistic woman had included my article — written at the age of 19, with a lot I’d have changed by now — The World I Want to Live In, in a suicide note. I can’t remember if she actually attempted suicide, and I can’t remember, if so, whether she survived. I think she disappeared at some point. I hope she’s still around.

And I remember way too well thinking that death was better than anything life had to offer. Thinking that I wanted things better but that they couldn’t possibly really be better.

And then being astounded when I survived a bunch of inept attempts on my own life, a couple inept attempts by others on my life, and several gradations of hell, to find myself in a situation that is a lot better (and a lot different) than anything I could have thought up when I was in the worst of my despair (or frankly anything I could have thought up even when I wasn’t despairing). Not that I’m living any kind of fairy tale, or that my life isn’t difficult, but it’s better than it ever was before.

But even besides that.

I’m thinking of a post I read on Women of Color Blog called The Women the World Requires.

And a quote from it, “Which means that for our communities, death is not the ultimate fuck you–living is.”

And despite the immense differences between our communities and the communities talked about in that blog entry, that one statement is also true for the autistic community, and the disability community in general. People expect us to die off. A lot of them even want us to die off. The pressure to die is far greater at times than the pressure to live.

I’ll never condemn a suicidal person, because I’ve been there, but I’ll hope and pray that from somewhere they will get the strength to keep living in spite of, even in defiance of, a world that too often says we’re better off dead and forgotten as quickly as possible. Even if it’s just dragging through one nanosecond after another, each one seeming like hell to try to get through, even if you’re sticking around for something that you think would seem stupid and trivial to anyone else, even if you’re only sticking around because you can’t get up the energy to follow through with suicide… that’s how it goes sometimes. Things can get better. But (and no matter what some asshats may tell you in contradiction of this — and by definition anyone who tells you the opposite of this is being an asshat) even at that point where you’re totally convinced things can never get better and that my words here are meaningless and so on, the world is better off with you in it than out of it. That’ll be true whether you can manage to believe it or not, and the rest of us know it.

Edit: Can anyone, especially anyone in the UK who knows Danni, please let us know if Danni is okay?

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

37 responses »

  1. You’re quote that, “…for our communities, death is not the ultimate fuck you–living is,” is a bit misguided as I see it. Though I can see where that mentality may be attractive, it is only a short term cure.

    When contemplating suicide, you need to eventually also acknowledge the individuals whom you don’t want to send a “fuck you” too. Not only for those people who already do care regardless of your own self-imposed beliefs; but for those future people who will, without exception, surprise you by their capability to care for you.

  2. We are social animals by nature, some to a greater extent than others. We depend on one another first as a family and as parts of increasingly larger groups of people. So to me, life is not about anyone getting their individual way (wishing so and so with a disability would die off, wishing I had more money or more stuff, etc.), but doing what it takes to coexist peacefully. To achieve this, we have no option but to show compassion and empathy (not pity) to all around us. If NTs are receptive to this viewpoint, I think that living with someone with a disability more or less puts people on the fast track to more a compassionate and fulfilling existence. Just my $.02 worth.

    “the world is better off with you in it than out of it.” Yes it is. I was driving home with my son in his booster seat earlier today, and kept thinking how I could not imagine life without him. Kept reaching for his soft hands at red lights and did some extra cuddling at home. If he doesn’t mind living with parental units as an adult, I hope he will want to live at home after high school.

  3. (in reply to reply#1) A long time ago, I was part of a group of people having a conversation. I wasn’t really participating, but I was there.

    One woman in the conversation, who’d formerly been homeless, said something (in recounting that period of her life) like “When you’re homeless, people don’t care about you.” It was a side-comment, meant to illustrate that the vast majority of people in fact are not very friendly to homeless people, and many people don’t care what happens to you. She was not singling any particular group of people out as uncaring, and she wasn’t pointing fingers. She probably would have acknowledged that there were in fact some very specific groups of people who tend to care more than others, and some very specific individuals who might have cared at one point or another. But that wasn’t the point of what she was talking about, and she was going to keep going in the conversation.

    But the conversation never kept going, because another woman was very insulted by this statement. She said, essentially, “I care about the homeless dammit, and I’m not going to let you forget it.” She ranted on for ages trying to get the formerly-homeless woman to acknowledge that she, at least, was a caring person. The formerly-homeless woman was quite turned off by this approach, as most people would be, and thus began a long relationship of hostility between the two that might never have existed had the second woman not been so bent on proving that she was a “caring person”.

    I don’t really see a lot in my post or the post that I got the quote from, that says that particular individuals don’t care. Both posts talk about a general climate of inequality, indifference, hostility, scorn, ridicule, and hatred, that is real, not self-imposed. No amount of waving a magic internal wand of positive thinking will keep these things from existing, they are quite real. If these things are overshadowing all the good things of the world in your head, to the point where you’re considering dying for it, it makes a lot of sense to turn it around and say, “No, dying won’t fight this stuff, but living will.” And it does.

    Of course it’s not the end of things. But when you’re in that mindset where all you can think about is the next nanosecond, it’s something. It’s certainly more substantial than living to see the next episode of a television series, and even that would be a perfectly acceptable thing to live for when it’s what’s standing between you and death at that moment. Pretty much anything is a totally acceptable thing to live for, no matter how trivial it seems to others, and no matter how insulting it seems to others who want their feelings considered right then. If saying “Fuck you” to me was all that kept someone alive at a particular moment, I’d want them saying it, shouting it in my face if that’s what it took. A human life trumps my feelings any day of the week.

    At that moment, practically anything that keeps a person going is acceptable to me. Of course, as the moments pass, and turn into longer and longer periods of time, there’s more to live for, there comes a point past which you don’t even need a reason to live other than that you’re already alive. I don’t really have a stack of reasons to live at the moment because I don’t need one, I have no desire to die so I don’t need a reason to live. But for someone who does need one, living as a way of saying “fuck you” to those who want to destroy their life (and if you don’t want to destroy their life, you probably don’t need to take even the slightest hint of offense at that) isn’t the worst reason in the world by far.

    Then again, it’s not the only reason I describe for staying alive, and it’s not the only reason the person I quoted described for staying alive. And in neither case is it just a reason for staying alive, it’s wrapped up in a lot more complexities than that. It’s hard to reply to your post, because your post doesn’t seem to be entirely in reply to my post, or the post that I got the quote from, but to some different idea.

    But at any rate, both posts also talked about how people do care (even if that’s impossible to notice at the moment, and sometimes it is, and guilt-tripping the person unable to comprehend it doesn’t help them comprehend it, it often makes them feel like an evil person for being unable to acknowledge your caring, at which point their response is likely to run something like “so then I deserve to die”) and how living for the people you love is another reason to live. There are tons of them. Not all are palatable to everyone, but they’re all at the end of the day reasons to live, and sometimes in the moment that’s exactly what someone needs.

  4. It’s very hard to reason with extremely depressed people. One side effect of being extremely depressed is that one might not have the brain-power or energy to plan and carry out a suicide.

    I’d just like to say that for parents considering suicide and thinking that they should “take their kids with them.” That the world would be a sadder place without a caring mom or dad and it would be a sadder place without their kids in it.

    I think the big message is that you can’t know if things will get better and they do usually get better soon. Life is like that, you get surprises both ways, good and bad.

    I think belonging to some kind of real world support group/congregation or something makes a big difference. It has in my life. Not that I “reached out” to anyone when I was in despair, but they had expectations that I would be in such and such a place at such and such a time, and it’s good to have that kind of routine. It can keep a person going when they have no particular will to live.

    The other thing is depression keeps people from seeing what is good in their lives and keeps them from seeing where things are about to change. That’s scary, because the good things can be pretty good, and be invisible to the depressed person in isolation.

  5. Looks as if we have found ourselves standing shoulder to shoulder at one of those forks in the road with an infinite amount of right answers and an infinite amount of wrong answers.

    Perhaps, another way to look at it is that the answer I gave was more an answer to myself at this moment. And potentially, your answer was an answer to yourself at some moment. Or perhaps our answers were equally answers to us both but we stumbled upon our respective one first due to our history, current situation, and thoughts about other people’s views. For instance, at a point in my life I admit that I thought along a similar line to the quote above in a time of personal strife. But I can say that I haven’t thought that way in a while (similar to how you described in your last comment).

    But with age and time comes an amalgam of more complex thinking that can be considered, and which I was trying to express based on my current views. But I didn’t mean to come off as it being the perfect solution, frankly it is a bit too romantic even for me at most times. But I have been considering the nature of life a lot recently and one of the stumbling blocks I come to is that it seems that what we all seek in some form, is just a connection with other people (some may want to insert a “spiritual connection” but I hesitate at such an insertion for fear of sounding religious, that is not my intention at all).

    For instance, you’re post is much more than saying “death is not the ultimate fuck you–living is.” I think the real impact in your statement is the common feeling that you may share at that moment with what a person reading might want to share. It is re-enforcement, it is that surprised instance of caring that I was trying to describe.

    Ultimately, I feel we are expressing the same thing. My take may just be in quartz and yours may be in onyx, you can never quite tell what rock someone else may be looking for… but I think we can agree that they are looking.

  6. I’m alive. Not ok, but alive. The police woke me up at 4am to check on me (and said it was someone in America who contacted them). There’s a lot of things going on at the moment that I have no control over, and I can’t cope with it. I’ve also lost or am losing everything and everyone I care about.

    I don’t quite know how to take someone getting the police to come around right now. I would like to know who it was though.

  7. I didn’t call the police (wouldn’t even know how to do that at a distance), I found out about you after a bunch of other people seemed to already know. I’d written the post because of Seth and someone I didn’t know, and then someone thought I’d meant you (although if I had, I wouldn’t have said I didn’t know you) and said something to me about your post.

  8. I’ve been at the point of wanting to kill myself, even made a halfhearted attempt. I’ve hurt myself, withdrawn even further into myself, felt as though I could see no point to anything anymore. I’ve sat and listened as my inability to ask for help has made people presume I don’t NEED any help and I see this rift between myself and others, I don’t feel as though I fit in. What kept me going was the assertion that NOBODY is going to call me inferior, NOBODY is going to tell me that there is something wrong with the way I think, with what I like to do, with how I act and NOBODY is going to make me feel I have less right to be on this earth than anyone else.
    The lack of help for anyone in the UK who have been diagnosed with being on the autistic spectrum, or with related things like adhd is pitiful to say the least. I count myself lucky I got a diagnosis at the grand age of 31. Certainly there are no services in my area, or anywhere near. They tend to stop after a person reaches 18.

  9. Someone once told me that depression is anger turned upon one’s self. It seems that the antidote you use would be right Besides…being a bartender’s daughter, it’s kind of different to see “real” talk.

  10. PS2: yeah, Amanda, i didn’t know which person you knew and which you didn’t (the man or the woman). only later i knew more details as we were all talking in SL.

    did you hear if the other woman is ok? (the one that you don’t know personally)

  11. I often wonder if the reason there are such meager adult services is that they think living through a childhood is “plenty” for us and they expect us to “get our own aether”/”move out”/”be gone” by then, what I mean is, what you mention in the article here, i.e.: suicide (euthansia) or other slow forms/stresses/purposefully poor care etc.

  12. You make a good assertion LAH, people can often make highly erroneous assumptions about other people, which in turn can lead to dangerous precedents set in terms of what help and support is offered. The idea that the autistic spectrum exists in adulthood is a concept that many find difficult to grasp.
    BTW, Danni, if you read this I have tried to post (think I posted twice, sorry) on your blog. If you haven’t got it, I just want to tell you not to give up, there are people who care about you and want to help you. The same goes for anyone else feeling there is no point to anything anymore.

  13. the thing i have to compare this to is suicidal thoughts as a result of homophobia (which has caused a fear of someone trying to harm or kill me, fear of things i’ve earned being ripped away from me, etc). i no longer experience them, but they’re always lingering with people i know. and then for some reason while thinking about the fear of being killed, i think about nazi concentration camps. i wonder what the experience of autistic people was in those camps. i’ve never heard it talked about. i realize this comment is rambly and makes no sense.

  14. @ lordalfredhenry, I am probably preaching to the choir here…the system in the US is so seriously messed up, starting with key assumptions and artificial labels. Not to mention the wild difference in the availability of community-based supports based on the state where one happens to live.

    Let’s start with the first key decision: who is eligible for adult supports or services? Well, some very important people at some point decided that it would be the disabled at risk for institutionalization (now how is it that they got to decide who would and would not be institutionalized?). So that automatically leaves out all the people who could use some key services here and there, but not 24-hour care. If someone is at risk of being shipped to an institution, that could still very well happen depending on the state where one lives. Mine has a strong institutional bias and, despite the well-documented facts that caring for someone in an institution costs three times as much as providing supports in the community and the benefits for an entire community of providing supports locally, if a disabled person has MR (an extremely offensive term to begin with, but nonetheless still widely used) then off to an institution they can go. Let’s not go into the whole concept of the obsession with measuring IQ or what having a certain IQ number even means. The entire system from beginning to end makes no sense. I could drop my son off at a public long-term care facility and they would admit him immediately. For supports in the community, we have to be on a waiting list for years and go through (so far) five screenings answering the same questions, only to find out that oh well, companies that provide these services in my community maybe don’t have the room for him at this time and who knows when they will.

    I am told that companies that run the institutions donate considerable amounts of money to state legislators and that many states essentially see institutions as jobs programs for the communities where they are located. It is maddening to wonder where to begin, but I encourage people to offer to write and meet with state legislators, give them a feel for how life is without the proper supports, speak up during public forums, etc. To the people holding the purse strings, the autism and disability population is invisible unless told otherwise.

  15. I’m an occasional reader who just wants to point something out.

    In case anyone reading this is not aware, there is a 24 hour, nationwide (US) telephone service anyone can call anonymously when they are feeling suicidal or otherwise in crisis:
    1 800 SUICIDE.

    Of course, this is most useful for people very comfortable with telephone speech. However, you can still call through whatever relay service operates for the hearing or language impaired in your state (for us it’s Florida Relay) and talk to the same counselors, just by typing rather than talking.

    I volunteer on one of these lines and while I don’t have any easy answers, nor can I offer someone a reason to live, I can offer the chance to talk to someone who is at least trying like hell to hear and understand. For many people, having another person really connect with the pain and hopelessness they are feeling is enough to remind them that there is still beauty and meaning in the world.

    For anyone who is considering suicide or just feeling hopeless and isolated, at least give these lines a shot before killing yourself. You can always call, then pull the trigger, but once you pull the trigger it’s too late to call.

  16. I would definitely agree with the above comment about the lack of adult services i.e. having the assumption that making it through childhood is enough. In the area I live one agency is complimented frequently with the fact that “the clients have outlived their lifespan”. Never mind the fact that they arent integrated into the community or that they have no way of communicating with anyone if they did. They should be grateful that we keep them alive. Also irrelevant is the fact that they are finally getting good medical care -food to eat and clothes to wear. I have often found it interesting that the “life span” seems directly related to the attitude of “we have decided to allow you to live rather than see how quickly we can kill you”.

  17. In #16, LAH wrote: I often wonder if the reason there are such meager adult services is that they think living through a childhood is “plenty” for us and they expect us to “get our own aether”/”move out”/”be gone” by then, what I mean is, what you mention in the article here, i.e.: suicide (euthansia) or other slow forms/stresses/purposefully poor care etc.

    I think there is truth to that. I.e. how the “professional view” makes it seems like they think autisitcs fly away to Narnia at 18?

    Some of that is probably that hand-flapping et al might be cute at 5, but “bizzare” or “threatening” at 15.

    And add “embarrassing,” and I think you’ve got a part of the recipe for turning a blind eye to the needs of autistic adults.

    …Reminds me a little of a 6th grade assignment where kids had to pick an endangered species to do a report on. Lots of reports on dolphins, not many on the California Condor.

    – – – – – – – – – – – – – – – – – – –
    [ I spent a couple of hours writing the below, and now I’m not sure it’s all that relevant. Or, maybe my processing is just scrambled at this point. Anyway, I can’t bear to toss it out, so FWIW: ]

    I think another reason for the lack of services for adults boils down to self-pity, in observers of disabled people. Most people seem to think that their life experiece completely encompass everyone else’s. So, when they try to mentally simulate a disabled person’s life they get it wrong.

    They never imagine anything unexpectedly difficult unexpectedly stressful, or unexpectedly complicated: because the whole thing is built out parts that come only from their own experiences, which, by definition, do not include the experience of disability.

    So, nothing is suprising, nothing is all that hard, because nothing is outside what they’ve already experienced and adapted to. (Which, by definition does not include disability, if the person is not disabled.)

    So, it doesn’t really seem tough when you imagine it. (Unless it’s iconic, like blindness.) It doesn’t seem (in the minds of many, I mean) to warrant what the disabled person needs, or worse, demands. I think it’s seen as sort form of societal “cheating”.

    I.e. “I have to drive my car in commute traffic 6 days a week, my boss is breathing down my neck about an impossible project schedule, my spouse is mad at me, and the baby keeps me up all night…

    …And that wierdo neighbor, who isn’t missing any limbs or anything, gets free money from the govenment because they can’t get organized, don’t like crowds, & florescent lights bother them? Heck, I get annoyed by crowds and prefer natural lighting too. If they get free money because of that, so should I, because I have all the same so-called problems!”

    Meanwhile, in Reality: the said neighbor is nearing eviction, starvation, &/or getting arrested &/or beaten up for overloading in public, and maybe there’s some critical anti-eviction-related forms inside a building that’s totally lit with fluorescents and the person who gives the forms out likes to “teach people lessons” by not giving them out to people who are so rude as not to make eye contact, which looks awfully shifty-eyed to the nearby security guard, which is not good because stress is causing some stimming to show though, which the guard decides looks “dangerous,” especially since the person is not showing proper submission-to-authority signals in response to the guard’s posturing, and… etc.
    …And how that could be an average day.

    (As a side note: while people shouldn’t try to project too far from their experiences, I think everyone can still listen. That is, listen with an awareness that they may not get things on a certain level, but that that doesn’t mean their listening is somehow less respectful.)

  18. The last time I used a suicide hotline (a number of years ago), they called 911 against my wishes.

    I attempted to cooperate when they took me to a psych ward because I knew that being there voluntarily gave me a better chance of getting out than being there involuntarily. I explained to them that staff would be there in the morning, that the medication I had been using (for PTSD, and I used the full psychiatric terminology in cooperation with their system of viewing things) had ran out but would also be there in the morning, and that I would only need to be there overnight, and pointed out that given that my PTSD originated in institutions, then keeping me in a psych ward longer would only make the matter worse. They congratulated me on how much I was “helping myself” by doing this.

    I screwed up my urine sample because I have a lot of trouble with sequencing things like that. They got angry with me, treated me like I was deliberately avoiding taking a urine sample, and catheterized me. Of course, the urine sample did not show me ingesting anything I shouldn’t be. They told me soon that they would need to sign me in involuntarily even though I was clearly coming voluntarily, and that this was purely for insurance-billing purposes. Then they would send me to another hospital further away that had a psych ward.

    After the trip to the other hospital further away, I attempted to convince them that the involuntary hold was, as I had been told, “purely for insurance purposes”. They laughed at me and told me that wasn’t the reason at all, that I was clearly a danger to myself, and would need to stay there three days. (I was quite conscious that I was more a danger to people from staying there three days than I would be if I stayed there overnight, and knowing the reputation of the ward I ended up at, the ward itself would be a danger to me.)

    They asked me what I had PTSD from, I explained that it was from prior abuse in psychiatric institutions. They assumed I meant by patients, I said “No, by staff, and the shrink who diagnosed it was there to witness a lot of it.” They kept trying to reassure me that they kept their male patients separated in this place, and that abuse didn’t happen there.

    Later that night, I heard them beating someone up. When I woke up in the morning, I saw staff ridiculing and messing with the head of a woman who was hearing voices. Another woman, they seemed to delight in making her beg like a dog for everyday items like water, coffee, and clean socks. The only person they interacted even somewhat normally with was a woman who had dressed herself up really nice to go to her hearing for release.

    I spent the entire morning either not talking to anyone (because I was afraid of what I’d say or do if I did), strictly obeying any rules I could find to strictly obey, or asking repeatedly for my staff person. When my staff person did show up to get me out of there, she was freaked out too because she’d been in a state institution in the seventies that apparently looked exactly like this place. We had to wait several hours to get me out, and I was then reprimanded and treated like a naughty child for having come in in the first place (after having originally been told how responsible and wonderful I was being for “keeping myself safe”).

    If I could see all of that bad stuff going on in the 12 hours I was there, it was clearly a bad place. I later found out the same place routinely disregards people’s drug allergies and keeps people there as long as they possibly can (by repeatedly putting them on holds) and hates to let people go home. One woman was given drugs that made it physically impossible for her to speak because of her reactions to them, and then was taken to her hearing in that condition in order to prove she was too incompetent to let go. Things like that.

    That was my last experience with psychiatry, and it will probably also be my last experience with suicide hotlines. I no longer think about suicide to begin with, but even if I did, I wouldn’t call them anymore, because of that.

    I also found that when I used them back when I was still attempting to speak, that my speech patterns occasionally got the response of “You clearly have a formal thought disorder. See a psychiatrist immediately.” Strange that my “formal thought disorder” disappears entirely when I type (I’ve never been accused of having one in typing).

    At any rate, I found that it was just random chance on those hotlines whether I’d get someone who realized things like “PTSD from psych institutions means don’t put the person in a psych institution” or “autistic speech problems are not the same as a thought disorder”. I also got some people who found themselves depressed by me, and others who had strange religions they wanted to convert me to. It seems like it doesn’t take a lot to get qualified to work on those, and while there were some people who were helpful, the unhelpful ones were problematic enough that I at this point wouldn’t call back.

  19. Rachel Hibberd,

    I’ve never considered suicide myself, but if I did, I’d find it really hard, as a Deaf person, to bring myself to call through a TTY relay service. It’s hard enough to place your trust in one stranger when it comes to something vitally important and personal. It’s three times as hard to have to put your trust in TWO strangers at the same time (the person at the hotline AND the communication assistant at the relay service).

    There might well be people who use TTYs or video phones who feel differently and might be okay with calling a hotline through TTY relay or video relay. (The impression I get from reading autistic blogs is that text is still the more communication augmented communication approach for non-speaking autistics, and I imagine the same is true for non-culturally deaf and hard of hearing people who don’t sign. But for signing, culturally Deaf people today in the US, most now use video phones which allow them to use American Sign Language on the phone. Some Deaf people don’t even own TTYs any more, and younger Deaf people are apparently starting to see them as old fashioned. Deaf-blind people, though, will probably continue to use Braille or large-print TTYs for the foreseeable future.)

    But I suspect I’m not the only one who would be much more likely to use ANY hotline for ANY extremely sensitive, personal issue if I could call DIRECTLY to a hotline person who is using either a TTY or a video phone (and in the latter case, they would have to be fluent in ASL).

    Of course, this is all asides from, or in addition to, the issues that Amanda raises in comment #24 above.

  20. No, you’ve not bugged me :). Erm, any chance you’re an expat from the UK? There’s a section for that. Do you feel a spiritual connection with the Yorkshire Moors and Cornish Coast at all? (Joke :D). You could put it up on your site though, so any UK readers or expats can sign it. Word of mouth can help a lot.

  21. andreashettle,

    You raise a good point about relay services. It is hard to open up to a total stranger, especially if you’ve had negative experiences as ballastexistenz has. I’ve often thought that the technology is available for crisis workers to type directly to callers, i.e. through AIM or something. The system just doesn’t exist yet. Hopefully that will be something people continue to think about as the internet gets more integrated into these kinds of systems. I imagine one problem at first would be confidentiality if the internet is used, though I don’t know much about it. I’ll definitely raise the idea next time I’m talking to my supervisors about the computer system they’re going to be putting in the center.

    Ballasexistenz: Though obviously I’m not someone you’ve spoken to, I want to apologize on behalf of whatever crisis line you had a negative experience with. People on the lines are legally obligated to warn the police if they believe you are in imminent danger (as in that night) of killing yourself, and most people end up Baker Acted in that situation. I’ve talked to enough people and seen enough CSU’s to know that being baker acted is usually a horrible, abusive experience. However, it sounds like you probably didn’t need it and the person who called 911 was wrong to do so. In any case, they should never have done that without telling you about it first and giving you the chance to go to the hospital yourself. I’m not even going to get into the experience on an inpatient unit, I’m having a hard time dealing with how angry I become when I see the abuse that goes on in many CSU’s.

    At the line I work at, people are very well qualified. There is a 90 hour training requirement and people who are not able to cut it in training do not become volunteers. However, I imagine that not all crisis centers have been running as long as ours and I wouldn’t be surprised if many of them allow people who are less qualified to volunteer. I hope if you ever do use these services again, you have a better experience.

    PS- I have been enjoying reading your postings. It’s gotten me thinking more about disability rights/ autonomy issues and I’ll be staying tuned! Thank you for this service.

    Rachel Hibberd.

  22. Rachel Hibberd

    Thank you for checking into the options at your office.

    If you do figure out some way for people with various sorts of communication-related disabilities to call you, at least via text, then I suggest that the next step would be to make sure that people know about it. I know with Deaf people (and I suspect the same is probably true for other people with other disabilities), we tend to assume that things like hotlines and so forth are not accessible unless we see something specifically saying otherwise. Because, after all, most things are NOT accessible — and the few that are, usually say so. Some targeted advertising might help, but at least as important would be to INTEGRATE publicity for the accessible alternatives into ALL mainstream publicity (so, for example, if you have a poster publicizing your service in general, with the regular contact information for the regular hotline, then the SAME POSTER would also have the Internet contact information or whatever relevant information is needed, ideally with a line indicating that this is meant for people who are deaf, or hard of hearing, or who have speech/communication-related disabilities.

    I also suggest that, if you really do find a good system, you may also want to explore options for getting appropriate training for staff. A Deaf person calling to vent doesn’t want to have to launch into a Deafology 101 lecture in the middle just because s/he makes a passing reference to something the hotline person doesn’t understand. And for people with, say, aphasia, or autism, or whatever, you don’t want staff misinterpreting an innocent word mix up or echolalia speech pattern, etc., in some psychological way utterly inappropriate for the context. Any training also would have to give the flavor of diversity both ACROSS disability groups (deaf vs autistic vs aphasic vs brain injury etc) and also WITHIN disabilities (for example: not all deaf people necessarily sign or associate themselves with the culturally Deaf community; though, certainly, some do. Two people can share the exact same diagnosis label but have very different needs and preferences in terms of communication and linguistic style, accommodations for their disabilities, etc.)

  23. Danni, I’m reading here because I can’t get a comment to post on your blog. I’ve read a number of your entries and am really concerned that you are having a severe adverse reaction to Sertraline. I had a less severe reaction to an SSRI when being treated for post-partum depression, but it was really intensely hellish. Your posts really changed after you wrote about beginning it, and the not being able to sleep or stop moving are classic signs. In bipolar people SSRI’s can trigger a manic phase, and this could lead to some out of control behavior, irritability, anger…

    People do come back from situations like this and regain custody of their kids (I’m assuming this is what happened), get back a sense of self-control, rebuild old and new relationships. People are doing it all the time. Finding what you need to get to a better place may not be simple, but when you do find a place of stability, you’ll be able to demonstrate that and also have an explanation of what went wrong and what you need to keep it better.

    I’ll be thinking of you,

    Sherri

  24. Could hotlines perhaps warn people in their materials about the possibility of being involuntarily committed? If the laws on that can’t be changed, that is. Because the possibility of being forced into a psychiatric hospital is something people should know and understand. I know that were I in a situation where I might contemplate suicide, I would probably hesitate to call a hotline knowing about the possibility of being involuntarily committed. I would, however, be extremely reluctant to call a hotline if I’d heard about an involuntary hospitalization, and didn’t understand why it happened, what was likely to lead to being committed, and how to avoid it.

    In the first case (understanding what was likely to lead to hospitalization, and what would not), I might call if I felt what I was likely to talk about wouldn’t get me locked up, or if I were interested in being hospitalized. In the second case, knowing that it happened, but not knowing why, I’d never call a hotline, not being able to trust them. So while mentioning that the hotline would tell the police about imminent threats of suicide would discourage people who were calling in imminent suicidal crisis, and saved by hotline workers sending an ambulance to their homes, it would make a lot of other people more willing to trust the hotline. I don’t know enough about your organization’s philosophy or results to know what you’d prefer, but I would definitely favor making people aware of their choices and the consequences as a moral principle.

  25. J, that’s a good idea. Whenever I’m talking to someone who seems to have confidentiality concerns, I lay out the policy for them as honestly as I can. But in most of the places where the number is posted or on the brochures, this is not done, and I think you’re right that it should be. Cool idea!

    For anyone reading, here’s how it works in Florida, USA:

    Anyone who doesn’t want to give us their number or address is free to remain completely anonymous.
    If you do give us your number, we will never call without your permission (usually we call to see how you’re doing, let you know someone cares that you’re feeling OK).
    If you do give us your address, we will never send a Care TEAM (this only applies at our center, we have a mobile team who can go sit with you if you are desperate or suicidal) without your permission.
    If we do call, we will never identify ourselves as the crisis center to someone who is not you without your permission.
    We will never share information about you outside of the system of volunteers without your permission.

    All of this is subject, however, to the “duty to warn” bit in Florida law: If the volunteer believes that the caller is in imminent danger of killing his or herself, the volunteer MUST send out a care team and not leave unless the person is safe again or goes to the hospital, or send out the cops for Baker Act. If this is the case and they haven’t give us the phone number, we have a call tracing computer we must use. However, at my center, we know that Baker Act is a last resort and try not to use it. I’ve never had to use this option in three years.

    There is a similar law about child or elder abuse. Whenever someone is telling me about problems they have with anger towards their children, I warn them about this. Then if child abuse is revealed, our policy is to try very hard to work with the person and have the person report it themselves, which plays out much better in the eyes of protective services.

    Finally, the third law says that if we hear of a minor who is suicidal, regardless of imminent risk, we must warn the parent or guardian. I also warn teenagers of this. We only have to do it if we get the phone number, so this one is a little more of a judgment call. If the teen has a poor relationship with the parent and does not seem to have immediate risk, I will often allow the teen to have some say in whether we inform the parents (if they don’t give me their phone number, I have no legal obligation to inform.)

    Thank you also for your comment andreashettle. Now I have two topics to discuss with Crisis Center staff, and historically they’ve been very open to volunteer feedback and not at all rigid about how services are provided (probably because there’s only 5 of them, so no beauracratic (sp?) red tape.)

    It’s really valuable for me to be able to have this kind of dialogue with people. I’m about to start school to become a psychologist, and it’s very important to me that I don’t lose my ideals about allowing people power over their own lives, not harming people, and working in partnership with people instead of being some kind of Grand Poobah Wizard who knows all and demands respect. I realize the environments are going to be fairly challenging to this attitude, but it’s my life goal to be a constant fighter against dehumanizing aspects of the mental health system.

    Happy Easter/Passover, everyone. Sorry for the long posts.

    Rachel Hibberd

  26. Rachel,

    Your responses here are interesting………you seem to be very receptive to suggestions and that is quite commendable…….in light of the fact that not too many people in positions of assisting others are so receptive……..rather ironic, but alas, that is the fact on the field at the moment. Perhaps you might start a blog about it? if you feel like doing that……..the internet is an excellent conduit for getting ideas out to others in your field………….

    Danni……….I hope you’re at least somewhat better and I am thinking of you.

    I’ve been pretty depressed off and on lately. And although I am firm in stating that I doubt I’d try to end my life, I can’t honestly say I don’t think about it. When I do, I try to think about anything positive or just having nothing to do with ending life……..

    Ivan

  27. “I also suggest that, if you really do find a good system, you may also want to explore options for getting appropriate training for staff. A Deaf person calling to vent doesn’t want to have to launch into a Deafology 101 lecture in the middle just because s/he makes a passing reference to something the hotline person doesn’t understand. And for people with, say, aphasia, or autism, or whatever, you don’t want staff misinterpreting an innocent word mix up or echolalia speech pattern, etc., in some psychological way utterly inappropriate for the context. Any training also would have to give the flavor of diversity both ACROSS disability groups (deaf vs autistic vs aphasic vs brain injury etc) and also WITHIN disabilities (for example: not all deaf people necessarily sign or associate themselves with the culturally Deaf community; though, certainly, some do. Two people can share the exact same diagnosis label but have very different needs and preferences in terms of communication and linguistic style, accommodations for their disabilities, etc.)”

    Good point. I’ve had a similar problem, but it would be harder to think of a solution for it. The problem is that when I call a hotline (usually kids help line) I have to give my life history before I can explain what’s wrong now. Especially if I’m having problems about school trauma (which would be a good thing to teach them about regarding disability awareness – I know of several people who comtemplated suicide because of school problems).

  28. Hey all,

    I went into hospital later that day so have been unable to get online since (I’ve escaped for a few hours to get online and to do some necessary shopping). I’m safe, I’m back on mirtazapine which has worked in the past, and my psychiatrist is trying to find some autism support for me as he agrees I’m on the spectrum and apart from the current circumstances that’s the cause of quite a few of my problems.

    Calling hotlines isn’t an option for me- I have a phobia of telephones (not that I can hear properly when using them anyhow).

    Thank you.

  29. Just to say, possibly a bit too late that at the moment Danni is OK, managing…I just spoke to her a few days ago and my mates are in contact with her…I would know if she was not safe now

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