Holiday “joy”, and assorted communication stuff.


I am starting to wonder whether disabled people who happen to depend on paid staff for everyday tasks have a very different conception of assorted (secular and religious) holidays than other people do.

I’ve had a relatively new staff person and a completely new staff person this week, which has meant not only a lot of important things not getting done, but also a lot of things that are important for them not to happen keep happening. Meanwhile, my friend has had no staff at all some days and completely new ones for very short periods of time other days.

Which is probably why I’ve ended up mildly dehydrated and both of us have ended up pretty exhausted.

Meanwhile, of course, there’s other things going on. My dog has a UTI. I went to the pain clinic only to get poked and prodded around the neck area and made to turn my head in such a way that, whatever combined effects those had, I ended up vomiting, a lot, a few minutes later, and being queasy the rest of the day. My communication device’s USB port finally completely broke, and the loaner the company had been claiming to be about to send me since sometime in November still hasn’t arrived, nor do any staff people know about that since none of the ones who were here this week were around in November.

But there’s sort of a point to this besides whining. Seriously. ;-)

I’m not sure that a lot of people fully get the point that despite a working communication system, it doesn’t mean I’m going to be able to tell everyone what’s wrong at the moment they need to know it. I might not even be able to make it over to the $30ish computer I got for everyone to leave notes and scheduling information for each other on.

There are projects that have been supposed to happen starting since the day I got services here. They haven’t happened. I don’t know why. I do know that repeating myself about them occasionally doesn’t seem to do much. I’m told people are “working on” them. I haven’t seen the finished product.

I’m supposed to get a handicapped parking placard. Been supposed to for years. Even that, which is simple as projects go, hasn’t happened. Despite the fact that everyone on my support team has strong incentive for it to happen, especially in the winter with the chair and so forth.

I guess I’m not a very good nag. Especially when I find myself only able to communicate things to the people around me that don’t necessarily have to do with everything I need to communicate. There’s this weird assumption going around that if someone really needs to say something, it’ll get said, if they have the means to say it.

I don’t work that way. I have a long medical history, noted in my records (often by the staff who’ve had to deal with the firsthand results), the worst parts of which often result from me not working that way. Which reminds me, several medical professionals in about three different disciplines have been telling me I ought to consult with a surgeon soon. (I have this weird image of pulmonologists sitting around telling gastroenterologists something like, “Do something to keep ‘your’ fluids out of ‘my’ lungs.” I know it doesn’t work that way, but for whatever reason I find it sort of amusing to see people in various specialties as owning assorted sorts of body parts.) But I think everyone thinks it’s someone else who’s going to write the referral, and I haven’t been asking (in part because too much else has been going wrong and for a fairly large part of this month I wasn’t even usually awake). And then when I do talk to that doctor, all possibilities (whether having surgery or not having surgery) are somewhat scary and I’ll have to actually make decisions.

But it’s not even just medical stuff, it’s everyday stuff. I just don’t say it. Can’t always say it. And there’s so much of it. Sometimes the sheer amount of stuff I’ve got to say is the reason I can’t say it. Sometimes it’s the fact that if I told one part of it they’d do the wrong thing and I don’t have the energy to tell them how to do it right. There’s just a lot of stuff not getting done and very little of it that I can communicate about. It’s not that I’m not trying, either. It’s just there’s so much of it. I remember a staff person who got to know me really, really well, who just assumed that (where I lived before) when she left the house I got up and did a lot of stuff. She had no idea that I sat around in one place most of the time, and that this was the reason she would leave when I was in that spot and come back to find me in that spot, despite me having a need and desire to get up for a wide variety of reasons. (She did find out when I turned up with dehydration eventually and she asked a few questions that elicited the answer.)

Ideally eventually everyone will know it or a large portion of it. It’s just amazing to me how haphazard this process is. It turns out I’m some sort of strange beast the agencies haven’t encountered much: I am my own guardian, I communicate for myself, I receive their services, I’m classified by their testing system as severely disabled, and I have no clue how to tell them all this stuff that they normally hear either from their clients or their guardians. Usually, at least ideally, there’s supposed to be some other person pointing out what’s needed, but there’s nobody like that for me. My parents are across the country. I’ve got one friend here who has enough trouble directing her own services. I end up reading assorted manuals designed for everything from physically disabled people hiring their own support staff to parents of disabled adults trying to set up assorted support programs, trying to find something that would contain the lists of stuff that needs to get done around here. Sometimes I find stuff and sometimes I don’t, but nothing fully covers it. So in the meanwhile I just keep getting told how strange I am (first words out of one case manager’s mouth was “Our team (the one for people without roommates) doesn’t deal with people with this many needs this often”, and I spent the rest of the time he was my case manager trying to keep him from forcing a roommate or worse on me.)

Somehow there has to be something that can provoke the list of answers that would allow me to say what needs to get done around here (beyond the checklist assorted staff have already developed on their own). But so far I have not found it. And none of this situation seems fair to either me or to people who have to work for me (but who aren’t told much if anything, and of course with funding this low are not allowed to “shadow” other staff for very long before starting). There also needs to be some central point for information, and so far that’s only partway accomplished (and large, large pieces of it have not even been started, nor am I sure they ever will be unless something changes).

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

19 responses »

  1. As far as communication goes, this blog is very communicative. It is likely that your staff and whoever else could learn A LOT about your true needs, etc… simply by heeding some of the hints, suggestions, and info contained within this blog.

    I hope this doesn’t sound like a crazy suggestion, but maybe your staff and other important people in your life should be required to read your blog, as a sort of guide-line. Then, maybe they could learn your needs, in your own words, but in their language, right in front of their eyes, on the computer screen.

  2. “I guess I’m not a very good nag.”

    Try having a spouse —

    You ask them if they will be able to take care of something and they say, “Yes, Dear …” and it doesn’t get done for the damn longest time …

  3. “I have no clue how to tell them all this stuff that they normally hear either from their clients or their guardians. Usually, at least ideally, there’s supposed to be some other person pointing out what’s needed, but there’s nobody like that for me.”

    Oh … it’s not just the disabled. It’s the elderly too. When my grandmother was getting into end stage cardiac and renal failure, despite the fact that she was still well able to make decisions on her own it was like it wasn’t “real” to her doctors until my dad or I said something was okay.

    My mother is running into similar problems as one of her staff made some derogatory comment about my mother “directing her own care”.

    Crying shame this system is so geared up to enslave everyone.

  4. “Sometimes it’s the fact that if I told one part of it they’d do the wrong thing and I don’t have the energy to tell them how to do it right. ”

    How very true. Sometimes it’s more energy to correct what someone thinks they heard, than to try to tell them in the 1st place, because they’re going to hear what they want to hear anyway.

    I’m with others in thinking that your blog would probably be very informative to your staff.

  5. There is a lot of good information about ability to communicate, or lack thereof……on this blog. You might copy them and leave them for staff to read if you want………just copy and paste the parts that deal with that subject….make it a word document…….that way the more private stuff stays private (well….relative to your staff)

    I second Philip with the Happy New Year wishes.


  6. Not much useful to say, except that… we relate to many things in this post. We often have the problem of not realizing for a long time that we need help with a certain thing, due to having internalized the “default assumption” that the only reason a person would ever have difficulty doing this thing is because they “aren’t trying” or “don’t really want to do it.” And so we don’t think of those issues as being things we should or could ask for help with, even from friends. We’ve also had the problem, particularly with school disability services, of talking about our difficulties in doing certain things, then being asked what we would “need” in order to do them, and not knowing what to say. How does one know what would prompt or help them into doing a certain thing if one has never been able to do it before? At best, we can only conjecture and may be wrong: we once (years ago) believed that we would be able to do schoolwork better if we had a “rigorous schedule which allowed no time for anything frivolous.” The problem was that much of what we were then classing as frivolous, time-wasting, or useless activities on our part (largely because they had been classed that way by others) were actually useful to our survival, in that they were stopping us from either going into complete overload, or falling into depression.

    And even if we know we need help with a certain thing, we can go for literally years without realizing it’s even an option for us to ask for help of any kind. Our default assumption, for nearly everything, is that help is not an option; it’s so deeply rooted that we hardly ever even think to ourselves consciously that we can’t ask for help. It’s just part of the background, the framework, of our thinking.

    There are a lot of things we don’t say, also– both about services we need, and about our life in general and attempting to explain ourselves or our past to others– because there’s too much to explain, and because we have a track record of explaining parts of things wrongly and leaving people with the wrong impression, or being so frustrated over having too much to say that we’d explode with rage and barely say anything that was meanignful at all (which we don’t do so much any more, fortunately), and leaving ourselves in a worse spot than if we’d said nothing at all.

  7. Yeah, and then even if I want to ask for help and know I need help and have no problem asking for help and don’t think there’s anything wrong with asking for help, I just can’t keep that many things consciously in my head, so they aren’t there when I need to say them.

    It’s the old, “It’s not there unless it’s triggered” thing.

    Except occasionally I get really mad and come out with this rant that stuns everyone with being a seemingly endless list of things that need to get done that nobody’s even heard of because I couldn’t say them before. (And the only way I can keep the amount of energy required to say it all is to remain really angry, and then I usually end up crying afterwards because it’s not that I’m actually mad as much as that I’m terrified that I’m the only one that knows this stuff and then I have to be mad in order to be able to push it all out, but then I’ve gone into overdrive and it’s a mess.)

  8. I would very much not want to need paid staff for my everyday living needs. I value my independence and privacy. But needing them would not be far along the path, as it were, from where I am now as regards my living skills abilities. It is possible that some time in the future I will need support staff, but I would try to manage by myself as long as possible.

    I find it easy to imagine myself in the situation you were in, Amanda, before you got paid staff for everyday tasks. And being in that situation would frighten me.

  9. I had that problem in supported housing. Staff around nearly every day and even when I did manage to say things needed doing often it wasn’t noted or acted on. Despite how very hard it was to put it out there. But hey, I’m verbal and mobile so I’m capable, right?!

    It’s happened to me at GP appointments that I’ve handed over a note with say three issues on it and only one has been dealt with. Of course I’ve been unable to complain.

    Sometimes I’ve been to GPs several times over a year or so and there is some longstanding thing that still hasn’t been given any attention. Thankfully, as yet, nothing life threatening!

    It’s one reason I don’t persue the possibility of having support staff these days. At least I generally muddle through now on my own. Some things don’t happen but enough gets done to maintain life and tenancy (and cat!). Long may it continue, because what if it didn’t??

  10. Sometimes I have to get mad in order to get things I need to do done. I wonder what it is about being angry……that makes things happen/makes one think of important things…….is it the feeling of anger itself…..or something about the specific kind of mental energy that anger causes? I’m sure I’ve subconsciously thought about this question at some point, but only because of reading your response to another poster, was I able to come up with these words to ask the question.


  11. Ivan: Could it maybe be the adrenaline produced by anger doing something to give you the “boost” you need to get certain things done?

    Though if it’s adrenaline, wouldn’t fear produce that too … ?? And I see you and Amanda both mentioning anger as a help but not fear as a help. So maybe some other aspect of biochemistry … ? I don’t know enough about biology to guess. If Ettina is reading this, I wonder if she has the background knowledge to make a better educated guess (not quite “rare genetic syndromes” I know, but it’s biology at least)

  12. i agree with storybellz about how they should just read your blog. i think maybe you said some of them had(?). but *would* they read it, regularly enough to know stuff?

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