8:26am June 17, 2015

I suspect she’s wanting staff to show up and feed her and/or clean her catbox, and she knows they call to buzz into the building, so she’s pawing at the phone trying to get it to work.  Just my suspicion though.  She already knows that the buzz-in noise means staff are coming, and will run to the front door to greet them as soon as she hears the phone call taking place.

21 notes

10:34pm February 16, 2015

I never realized how big the USA is until I moved to Vermont.  Also, serious staff appreciation here.

And it wasn’t anything about the travel itself, it was about the immigrants who live here.

In California, immigrants tend to be from Mexico, Central America, Canada, East Asia, and the Pacific Islands.

In Vermont, immigrants tend to be from Canada, lots of parts of Europe and Africa, and mostly West Asia, South Asia and sometimes Southeast Asia.

There’s Latin@ immigrants in both places, but from different parts of Latin America entirely.

The foreign food stores are for different countries than in California, and same with the foreign food aisles in more standard grocery stores.  I had never even seen an Eastern European food store until my Slovak friend introduced me (and got me hooked on real paprika and chicken paprikash).

Somehow that shows me the distance I’ve traveled more than any other thing does.

Also the fact that when signs are bilingual here, they’re French and English, and in California they’re either Spanish and English, or Spanish, English, and several Asian languages.  Or in some places just Spanish.

This all came from a conversation I was having tonight with a sub floater from the Himalayas.  He siad most immigrants he meets on the job, like him, speak at least four or five languages fluently, most of them ones most Americans have never heard of.  He is always worried his English isn’t good, but because he’s over-careful his English is more “standard” or (in prescriptivist terms) “correct” than most English speakers I know.  

He says it’s because he’s so afraid of screwing up that he overcompensates.  Which sucks, but I always suspected that was what was behind the “Sorry for my bad English” – “But you speak English better than most of my friends!” conversation I’ve heard over and over again.  It makes me uneasy because it is meant to reassure but instead it doesn’t validate how scary it is to feel like you have to get it right all the time or face even more hostility than you already do for being brown and having a foreign accent.  Not to mention invalidating how hard he’s working to speak that well.

It’s like when people compliment me on how articulate I am.  And on the one hand, i’m very articulate on specific topics at specific times.  But it also means I’m likely to be penalized more harshly when I do screw up, when I can’t type, when I can’t be “on” all the time.

And I see how hard this staff person is constantly working.  It’s not just the language he’s struggling with, he’s struggling to appear likeable, he’s strugglig to fit i with a foreign culture,  

He’s amazing on the job – in December he started shadowing my staff to get trained in things like med administration and all my daily routine.  He did a couple weeks of shadowing, and then he suddenly was the one others were shadowing, and he taught them how to do things better than how he was taught.

There’s also a woman who is, unlike him, my only current regular staff person (besides the super-new lady from this weekend).  

One who’d been with me maybe five years, quit because she got married and wanted to start a family.  

Another who had been here almost as long, saw that I was unable to say goodbye to my father in person.  He himself is maybe a decade younger than my parents. His father is in his eighties or nineties and not in the best health. He decided to go spend time with his dad while he still could.  I was 100% behind that decision, even though I had gotten more attached to him than I normally allow myself to get – he felt like the grandfather I never had, even though he’s younger htan both my parents by quite a bit.  But he’s like the stereotypical perfect grandfather.  One of my grandfahers died without meeting me, and the other was a real piece of work, to put it chairably.

Another quit so she could go to med school full time.  She’s an example of a good Slytherin.  I told her her ambition and arrogance were going to be serious assets as shewen through med school, and that then she’d have to lose the arrogance and get some humility in order to treat patients well.  I think she gets flak because arrogance, ambition , and a “cold” demeanor, which are frowned upon in women.  But I actually liked her and we got along great, she was blunt and straightforward and never hesitated to say what she thought.  We got along great.

Then there was another staf person who got promoted to sub floater.  Sub floater make more money than regular staff.  They go to your house when your staff is out sick or on vacation.  Or, as in my case right now, when i only have one experienced staff and one highly inexperienced staff.  So the floaters have been taking all the extra shifts and that’s good beecaus anyone who works with me since I got the feeding tube has to be well-trained and certified by a nurse.

And then last but not least, one of my favorite staff ever got promoted to case manager.  From the day she stepped on the job she knew all the stuff practically without needing training.  She also struck both me and other people as neurodivergent.  (And she did have a brain-related disease as a kid so at minimum she was a cousin.)  She reminds me strongliy of Anne, both in looks and personality.

So this is the first time i’ve lost so many staff so fast, and the sub floaters are all being trained one by one.  The guy who was here tonight was one of the most talented and works the hardest, and unfortunately it makes me wonder if it’s racism dictating that he has to be better than the rest to seem even half as good to white employers.

On another related note, I think that staff who are recognized for being good at what they do should be offered three chocies:

• Promotion to case manager
  
• Promotion to sub floater or oher position that pays more than staff
• Stay as staff but receive a raise and an increase in benefits

I hate the way people think that case manager means better than staff.  It means higher up.  It requires an entirely different set of skills – many case managers make lousy staff, many staff make lousy case managers.  Doing really good at a job shouldn’t have to mean being “rewarded’ by being put into a job you’re not as good at.  Not that the transition can’t work – I think it will work for this person, the same as it did for two other of my former staff who are now among the best case managers the company has.  But she’s so good at being staff I think they should have offered her the same benefits and pay as a case manager only as staff, in addition to the other options, and let her choose based on what she wants to be doing.

But it doesn’t work that way, and front-line staff, who do the hardest work of all, get the least pay and the least prestige.  Which sucks for both staff and clients and leads to a high turnover rate and staff shortages like we’ve got right now.

And unlike most clients, I have so many medical needs that they have to train subs in how to deal with me.  Prior to the feeding tube, they’d just send subs in wit barely any instructions, or instructions so long and convoluted they kept calling their supervisors for conformation (asking me wasn’t good enough, back then – the nurse has set them straight that I know what I’m doing, and that any medical risks I take are well-calculated between me and my doctor, and not to be tampered with by agencies and staff. 

But right now?  Great staff, great sub floaters, great nurse who puts her license on the line to make all his work, just almost entirely great people I’m working with, even after losing a lot of them to promotions or family problems.

And the current staff who’s been here the longest?  I wasn’t sure about at first.  She made a lot of errors because she was terrified and anxious all the time about getting things wrong.  Fast-forward a year and she is training other staff and sub floaters better than anyone, totally confident, totally blossomed into this wonderful interesting person I couldn’t see much of before because she was so scared.

21 notes

1:41am January 3, 2015

Is it just me, or do a lot of these “Life Hacks” screw over poor and working-class people who are the main ones who have to deal with the consequences?

In fancy sit-down restaurants, you can order a large meal and halfway through the main course, take a little dead cockroach or a piece of glass out of your pocket and place it deftly on the plate. Jump up astonished and summon the headwaiter. “Never have I been so insulted. I could have been poisoned” you scream slapping down the napkin. You can refuse to pay and leave, or let the waiter talk you into having a brand new meal on the house for this terrible inconvenience.

-Abbie Hoffman, Steal This Book

You’d leave scraps for the stray cats, and leave out the plate

It’d always be empty next day

What she didn’t finish, she’d leave for the cats

For she knew what it felt like, to live like a stray

 

— Donna Williams, Not Just Anything

Keep reading

64 notes

4:48am November 15, 2014

So most weeks I Skype with Anne on Friday nights. Not lately, too much going on in our lives, but usually.

And there’s this sub floater (person who takes on jobs with random DD clients when our regular staff are out for some reason) named Anthony.

And there’s this Tylenol bottle that’s the bane of our existence around here. Basically the liquid is so thick that when you try to draw it out with the syringe, it actually sucks some of the fluid back into the bottle, even when held upside down, and then the syringe pusher thing goes up with it too. So you can pull it down to ten mL, look away for a minute, and it’s at 5 mL. Which is very frustrating after awhie.

So Anne and I were sitting there chatting. And Anthony was trying and failing to draw 10 CCs of Tylenol. And he started muttering at the bottle, progressing to cussing it out and nearly yelling at it.

At which point Anne said, “You tell that Tylenol, Anthony!”

Which has become a famous story by now among anyone who works here, especially because everyone has cussed out the Tylenol at least once.

Of course what goes around comes around. And one day I was trying to get a syringe of water into the silicone side-port of my j-tube, and it was not wanting to go in. At all. So I started making what everyone around here has learned to call “grumpy stick noises”. Sort of an annoyed mutter-grumble. And the staff person watching me goes, “You tell that water, Mel.”

I laughed so hard I was crying and couldn’t stop laughing for a good five minutes.

Fortunately Anthony has a great sense of humor or he’d never live this down. I honestly think a sense of humor is necessary to work at my apartment, because we do so much gross and disgusting stuff that the only way to deal with it is through really dark humor. (Do not ask me to explain “blood fetuses”. You don’t want to know.)

11 notes

3:44am November 4, 2014

So there’s this new staff person who is not only the world’s biggest nerd (I’m a nerd, this is a compliment) but also has myasthenia gravis and has the same neurologist as me (he noticed my Mestinon bottles and asked questions, because Mestinon only really treats one disease - he managed to get into clinical trials so he’s also on some new drug he hopes will help. It’s amazing though having a staff person, even a sub, who just gets it about chronic illness, and your illness in particular, and shares 95% of your nerdy interests. We talk way too much when he comes by.

Anyway he decided it was criminal that nobody had set up my bidet. He rightly deduced that my butt was in very bad shape. I’ve never been able to wipe properly - it gets on my hands and stays on my butt all at once. I’m in occupational therapy for that because it limits where I can take a crap. But until we comes up with a solution (our current one involves mirrors and squirting bottles - I can wipe other people’s butts so we figure the problem is I can’t see my own) there’s the bidet.

So we were missing a T joint, a vital piece of plumbing for the bidet. He went off to the hardware store down the street. He discovered that T joints were $15 and I was very low on cash. So he instead spontaneously manufactured his own T joint out of parts around the store that cost him $3.

He refers to this process as “Frankensteining” - which is exactly what I called it when I created one functioning suction drainage bag out of silicone tape, a gravity drainage bag, and a suction drainage bag missing some pieces. Anyway after some silicone tape of its own the t joint hasn’t leaked a drop. I owe him one.

But I’m also impressed that he realized my toilet seat was a major priority and took it upon himself to fix it, using partially his own time. He’s very good with his hands - this is a specific nerd specialty he shares with Anne - and very observant. Not many people who’ve known me for ages put together what lacking that toilet seat meant as far as the bare, disgusting facts. I’ve gotten infections before this way. So I’m very grateful plus it’s always cool to have nerds to talk to.

26 notes

9:21pm October 22, 2014

Well that was interesting.

So sub floaters (people who do substitute caregiving duties for the local DD agency when the person’s regular caregivers are out sick or something) all have to be trained in my care, because a nurse has to teach them some stuff, and then also my staff have to teach them the regular routine. It’s gotten so that some of the subs are just as good at it as the regular staff, and that’s how it should be. Usually isn’t that way, but should be that way.

Anyway I was asked if I’d be willing to have a new sub floater shadow recently, and I said it was fine with me. When the person walked in… sometimes you can just look at someone and know within an instant that they’re a geek. And it was like that. So the person and I geeked out about a bunch of things the entire shift.

And then it turns out they have myasthenia gravis, too. And so we had that in common, and that was really weird because it’s not a disease that people normally have. And then it turned out we were diagnosed by the same neurologist. (The only reason the topic came up at all was because they saw the bottles of Mestinon sitting around, and Mestinon only really exists to treat one disease, so yeah. This person turns out to be in clinical trials for a drug that would affect the immune system without full-out suppressing it the way CellCept does. I hope those trials go well because CellCept makes me incredibly uneasy.)

So I may occasionally have a geek with myasthenia gravis working with me, and that’s really cool.

28 notes

8:58pm October 15, 2014

I miss him already. He taught me how to be laid back and let things happen. Not something I’m normally good at, but he is. He was an amazing caregiver and an all around good person. And I think he worked for me for five years. I always told him, if you need to leave it is fine. I know you’re paid to spend time with me and that inserts weird power dynamics into the relationship.

But if I gave him Dave Hngsburger or Harriet McBryde Jonnson or Connie Panzarino or Dick Sobsey to read, he read it and took it to heart. We had lots of discussions about disability rights and ethics and we were fine disagreeing with each other as long as we respected the other person had reasons for tier beliefs. We were the same way about religion, and had amazing theological discussions. And trust me I don’t usually put amazing and theology in the same sentence.

The job of caregiver is odd. You are too intimately involved in someone’s life not to form an emotional bond. But you can’t really be friends, not usually, because of power and money. And you shouldn’t generally try to be friends, for other reasons that have to do with preventing the disabled person from forming our own friendships with regular people, like other disabled people or just random people who aren’t paid to be around us. And at the same time, you do get attached.

And I really like this guy. He’s what I wish I had in a grandfather, If I’m watery earth, he’s watery air. He’s just a great guy.

I told him he was always welcome to visit, but not to promise to visit because I didn’t want to make a liar out of him. I’ve never had a staff person promise to visit then follow up on it. That’s fine. I just prefer honesty. Including avoiding self delusion.

Anyway I will miss him. I hope to see him again but will never count on it. He’s a great guy. Truly in this field for the right reasons.

And he is the kind of guy who could look at the bile and blood that came out of my feeding tube and say “if you forget what this is, it’s actually quite beautiful”. And he has a good heart. I hope he lives a long time so his grandchildren get the full benefit of growing up with him in the house (they’re a multigenerational household and he does a lot of child care, loves kids). Also the kind of guy who when raising his own kids, allowed their guinea pigs to nest inside their couch until it became intolerable and they had to throw out the couch. Quirky and sweet and not too concerned with being masculine. Great guy. Will miss him. Already miss him.

37 notes

12:38am October 11, 2014

It never fails to make me cringe

feliscorvus:

(Content warning for discussion of disabled people being treated in squicky ways)

When I encounter groups of disabled people (usually, but not always, teenagers) in shopping centers being led around by staff. Mainly because there’s this whole dynamic that I perceive like a wallop to the face. Where the staff just…seem to have no real boundaries with the clients. I see them “steering” clients by the shoulders when the clients notice something of interest on a shelf. It would be one thing if this were all about providing sensory feedback to overcome inertia or help navigate through a crowd, but this doesn’t look like that at all.

And there’s this really obnoxious vocal cadence they (the staff) often use, that I would almost wager they are *trained* to use, given how common it is. It sounds almost like a voice you would hear in a cartoon being used by someone scolding a naughty puppy. And I am just thinking, good grief, these people are at least high school age, why would anyone talk to them like that?

But really the thing that gets me is that with a few slips of fate, I could have ended up in one of those places and been allowed in public only in the company of someone who talked to me like that. So when I see these teenagers, I don’t see it in an “oh how nice, look, those poor kids are getting an Outing in the Community!” warm fuzzy kind of way, I see all the ways in which their freedom is actually being restricted, and the way the staff basically has them on leashes, just not the physical/visible kind. :/

Parades.

That’s what my brother calls them.

I’ve been in parades since I was a teenager.

They tend to call them “outings into the community”, which rubs me the wrong way on so many levels.

My staff/client picture was a one-on-one version of a parade.

Just like institutions can be just one person, a parade can be one person and one staff.

Does it disturb me that I think of us as “people” and them as “staff”?  Yes.  It’s caled being conditioned by the system   Staff have the opposite problem.  They are “people” and then there’s “clients” who are… not quite people.  Only when staff have that view, it damages clients, and when clients have that view, it can be a problem but it doesn’t result in death and tragedy. 

And in reality I do see staff as people.  All my staff are people I have great relationships with, really good ones, amazing ones especially for the field they’re in.  They retain their humanity and their boundaries and we can have wonderful friendly relationships without being friends and it’s great.

But they have power over me and I never forget that.

And when with other DD people it’s just so easy to slip into referring to us as “people” and staff as “staff”.

Anyway, the parades…

You see a staff at the beginning, maybe two staff or more.  Then you see a line of DD people, often moving and reacting to our environments in unusual ways.  Usually some have CP, some have intellectual disabilities, some have brain damage, some have autism, and some have a combination of several of those.  People are talking, with a wide variety of ‘disability accents’, and are also usually some people squealing or making other unusual sounds.  Sometimes there are staff going up and down trying to make people look or sound more 'normal’, but most of the time they’re too busy making sure we’re all there and doing whatever we’re supposed to be doing.  For whatever reason, in almost every 'parade’ I’ve been in, there’s been exactly one person with braces and crutches who takes a long time to walk and occasionally gets yelled at for that.  Some people are stimming or ticcing, always, and a lot of people have unusual postures.  There’s sometimes a few disabled people who can and do try to pass themselves off as staff, and they can be twice as condescending as (bad) staff generally are.

And yes, staff tend to set the tone for how to treat us, and if staff are treating us like children, then the public treats us like children as well. 

25 notes

1:12am September 15, 2014

You TELL that Tylenol!

• Sub staff (name withheld in case he's embarrassed): [ranting at Tylenol bottle, which kept pulling back the liquid he was trying to draw into a syringe]
• Anne (on Skype chat, witnessing all this): You TELL that Tylenol!

14 notes

10:03pm September 13, 2014

Caregivers and abuse and murder and neglect (content warning for every-frigging-thing).

Right now I have one of the most amazing teams of caregivers I have ever had.  These are people who get paid shit wages to come in and take care of me, mostly stuff involving housework, feeding tube care, and personal care (a euphemism for things like having your ass washed by someone else).  

And they not only come in and do it, they do a really good job, they’re respectful, and we get along really well.  They’re not my friends, and I always maintain that boundary because it’s really important to me.  But they are people who I like, that I miss when they are gone, and who feel the same about me.  It’s a weird kind of relationship because it’s more intimate by nature than a lot of working relationships, and yet it’s not a friendship, and trying to turn it into a friendship practically never works — you end up having to choose, friend or staff.  There’s too much of a power dynamic there.

And it’s the power dynamics I want to talk about.  Nondisabled people hear the words that we use for staff and they don’t get it.  They hear ‘staff’, which is a holdover from institution staff.  Staff is a word that generally has a connotation of being below someone in a hierarchy.  But what staff means in an institution or an agency setting is that the staff are at the bottom of the hierarchy of employees.  There’s one group of people below them — the disabled people.  So when a disabled person says “This guy’s my staff,” sie means, “This guy has tremendous power over everything that happens in my day, and yet is powerless over his bosses at the agency, which can be a dangerous combination for me because I’m the only person he can take his otherwise powerless status out on.”  Sort of like how a child in an abusive family may take it out on the dog because the dog is the only person with less power.  In developmental disability agencies, we are the dogs, power-wise.  And that goes even in good agencies with good staff — it doesn’t make the power go away.

And some disabled people, especially physically disabled people, have tried to come up with fancy names to mask all this.  Personal attendant, personal assistant, things that sound like what a bank manager has.  But it doesn’t stop the fact that when it’s time to transfer into bed, that ‘personal assistant’ of yours is the one with the power to do it and the power to choose how to do it.

One of the worst things about caregiver abuse is it’s nearly impossible to prove.  I had an LNA punish me for being unable to wash myself, by scrubbing me so hard it hurt.  I told her she was hurting me, and she smiled really big, said “Thanks for the feedback!” in a bright cheery voice, and scrubbed harder.  We tried to talk to her supervisor, but her supervisor said that it was all okay because it was in the name of motivating me to do more for myself.  (I was lying in the hospital with pneumonia, delirious and near adrenal crisis.  I wasn’t doing a damn thing for myself and it wasn’t the time or the place for anyone to decide to teach me a lesson.)

That’s how physical caregiver abuse works though.  It’s often extremely subtle.  It can be a matter of how hard they jolt you when they transfer you.  How much anger flows through their arms as they scrub your body.  These are not things you can quantify on a checklist.  They’re not even things that an eyewitness can always pick up on.  They’re just subtle differences from the way you would do things if you do them right.

And there’s judgement calls.  I had a caregiver once who treated me like a piece of wood.  But not just like a piece of wood.  You know how when you’re in the kitchen and you’re mad, you slam the plates around, you slam the cupboard doors shut, you make unnecessary noise and use unnecessary force?  Well when she was angry about something, and it didn’t have to be anything about me, she would do all those things to me.  She would turn me over in bed harder than she had to, she’d hold my body down too hard, she’d scrub too hard, she didn’t even realize she was doing it.  Because to me, I wasn’t a person, I was an object.  I was just one in a long line of bodies that she had to scrub to get through her day.  And I was only a body, I was not a person.

Another time I was sexually abused by a caregiver and chose not to report it.  It was, again, too subtle.  I still don’t understand how you prove, to an agency that has a vested interest in protecting its workers, that a touch was a caress and not a clinical touch.  There’s a difference.  I could feel it.  It made me feel exactly how I felt when I was molested as a child.  But it wasn’t genital contact (well there was contact with my genitals as she washed them, but there was nothing special about the way she washed them as opposed to the way she washed the rest of me), and it was so damn hard to prove that she was getting off on touching me in a certain way.  I knew I could endure the abuse better than I could endure the scrutiny that would come after reporting the abuse.  And given that this was an agency who protected someone who took a swing at me in front of witnesses, I had no reason to believe that someone caressing me with no witnesses would get in the slightest bit of trouble.

So much of caregiver abuse, in the physical and sexual realms anyway, is a judgement call like that.  So much of it is something that can never be proven.  And yet a lot of that stuff is where the power lies.

I once helped another client defend her right to have her staff stay out of her living room.  We did it as politely as we could but I ended up having to literally stand between her and the living room.  Her staff threw a temper tantrum and refused to make her dinner.  (And then took a swing at me when I said this was a form of caregiver abuse.)  Refusing to make someone dinner because they tried to exert power over their own belongings in their own home, is a classic form of caregiver abuse.  The staff person then tried to make me leave, which of course I didn’t do — never, ever leave a client alone with an enraged staff person.  I found it very ominous, as did her client, that she wanted me out of the room so badly.  We didn’t know what she was planning to do to her when I left.

And that’s the thing:  No matter who holds the purse strings, staff always have power over disabled people.  Even if we go self-directed.  Even if we hire and fire people ourselves, and decide when to give raises and other things like that.  

Because always.  Staff can decide:

• When we go to bed
• When we get up in the morning
• Whether we get out of bed at all
• Whether we get into bed at all
• Whether we get food and water
• Whether we get our medications
• Whether our homes get cleaned
• Whether our pets get looked after
• Whether our groceries get done
• Whether our food is prepared
• Whether our butts get cleaned
• Whether we go to the bathroom
• Whether we get our bowel programs
• Whether we get our catheters, feeding tubes, trachs, etc. taken care of properly
• Whether our belongings are put within our reach so that we can use them when they are not around to help us
• Whether phone calls get made
• Whether appointments get set up
• Whether rides to appointments get set up

And not just whether, but how these things happen.  Whether they’re done in a civil way, or whether they slam everything around, including our bodies.  How much time is spent on things, whether they rush through everything making lots of mistakes or take their time to do it right.  

And there are plenty of wonderful caregivers, but even the best caregiver always has the power to become a bad caregiver if they wanted to.  If they got mad enough, they could take it out on us, and often they do, because people in hierarchical cultures tend to take out things on those beneath them in the hierarchy.

Worse, when we try to complain about things, I’ve heard a lot of people who don’t have caregivers, say really snide things about it.  Like, “Oh, you can never trust the help.”  As if having a caregiver that you depend on for everything, is the same as being a rich person with servants.  That one really bothers me because even though caregivers are usually at the bottom of the employment hierarchy, they don’t answer to disabled people, they answer to their case managers, who answer to people higher up in management.  There’s an entire hierarchy in agencies with disabled people firmly at the bottom of it.  And disabled people tend neither to be rich nor powerful in these situations.  It’s an insult to imply that there’s anything related between a rich person/servant dynamic and a client/staff dynamic.

Withholding care is a big way that caregiver abuse happens.  It can happen where one caregiver withholds care, but it can also happen where someone higher up in the agency withholds care.  I at one point had an absolutely wonderful caregiver who went above and beyond the call of duty by working for me for free when her boss decided that I was too annoying and that she was simply going to stop hiring people to work for me.  (The boss had no conscience and enjoyed putting clients in awful situations.  Her specialty was separating clients from our favorite staff.  Also having confidential, seemingly friendly meetings with staff where she’d gather blackmail material so she could get them to quit before they were fired.  Real piece of work.)

But it can also be staff who withhold care.  One thing that really upset me when I moved to Vermont, was that I did not get a say in unpacking my apartment.  My staff person told me it was unreasonable for me to tell her where to put things, so she just put things wherever she felt like.  It would have taken two seconds for me to point to where things should go, but she didn’t want to take the two seconds.  She made me feel like dirt, like this demanding horrible person, for wanting to say where my own belongings went.  I asked a lot of case managers and staff about whether I was out of line in that instance, and they all told me that she was the one out of line.  It got bad enough with her that someone called Adult Protective Services and to this day we don’t know who it was.  She insisted I must have arranged it, but I didn’t.  I wasn’t strong-willed enough at the time to do something like that.  In fact when APS called I told them the situation was resolved and to go away.

I know several women who have horrible yeast rashes under their breasts and between their buttocks, like ones where the skin is actually splitting open, because caregivers are not helping them with the kind of lotions needed to prevent that rash.  I used to get those rashes when I had big breasts, and they are incredibly painful.  Failing to provide medical treatment like that is another form of abuse.  I’ve never had anyone refuse to treat my yeast rashes, but I have had people allow me to lie in my own vomit for hours, resulting in long-term acid burns on my skin.

I’m not saying any of this to dump on caregivers.  I actually sincerely love each and every one of my current caregivers, none of whom have shown the slightest sign of doing these things.  But I’ve seen the best and the worst of the community DD system, and the worst is really bad.  

I think the worst I ever found out about was a woman who was, for years, locked in a room of her house, naked, with only her own shit to play with, which of course she did because what else was she going to do, and then they’d use that as an excuse to keep her that way longer.  This was not a formal institution but you can bet it was institutional community care.  Which is a thing.  You can have an institution with just one inmate if you pull it off right, and that agency specialized in taking people out of state institutions and putting them in institutional living situations in their own apartments.  (This is the same agency with the conscience-free case manager.)

Sometimes I worry talking about this, though.  Many parents of disabled children fear that their children, as adults, will be abused, molested, or neglected in the system.  Those are definite risks.  But then the parents sometimes say “I’m the only one who can take care of them properly.  So if I die, then my child has to die too, otherwise they’ll be abused and neglected their whole life.”

That’s not how the system works.  There’s abuse and neglect, but that’s not the whole system.  And even when it is what the person is experiencing, you don’t have a right to kill someone to remove the possibility that they will experience it.  Because even when you’re being abused, there are other parts of life, and you can still be glad you’re alive.  And nobody has the right to take life away from anyone else on any grounds like that, ever.  I am so glad that my parents have never thought that they are the only people who can take care of me.

And the ridiculous part, to me, is they seem to think abuse will be more likely from strangers taking care of their children.  When they themselves may be abusive or neglectful towards their children.  And usually abusers are someone known to the person, often someone from within the family.  So keeping everything within the family doesn’t get rid of abuse by any means.  I’ve been sexually assaulted by two relatives, four fellow inmates of institutions, and one staff person.  So that’s twice as many family members as caregivers, and what the caregiver did was much less awful than what my family members did.

And the thing is also that life doesn’t end with sexual assault.  Sexual assault is horrible, and you never fully get over it, but it doesn’t mean a person’s life is over and they are better off dead.  Encouraging people to think that about disabled people is horrible.  To me, the biggest red flag a parent of a disabled child, or a pet owner, can possibly throw out there, is “Nobody can take care of them like I can.  Nobody is fit to take care of them like I can.”  Because that almost always leads to thought of “Maybe I should kill them before I die myself, so that they don’t have to endure the hell that is being taken care of by anyone but me.”  And once you have the thought, you have the potential for action.

And that could be me, if I had different parents.  That could be you, any of my disabled followers.  It could be some of you, right now.  Some of you may have parents who are plotting to kill you when they get old enough or sick enough that they think their death is imminent.  This is real.  I’ve seen it.  Parents do a lot of disturbing things when they think their children won’t be taken care of properly.  And the two main things I see parents doing when their own death is approaching and their child is not in a secure caregiving situation and the parent really doesn’t get that other people can take care of their child without the world collapsing… is either institutionalizing their child in a way the child doesn’t want to be institutionalized, or killing them (or at least talking about killing them).

I can’t say how much this scares and enrages and terrifies me and makes me badly want a way we can get disabled people out of these situations.  I just encountered a disturbing letter today from a mother who believes that her child will never be happy if they have to rely on paid caregivers (because apparently being paid means they’re only in it for the money, which is laughable if you know how much they make), and that she wants to kill her child so that the caregivers won’t ever have a chance to do horrible things to her (adult) child.

And caregivers do sometimes do horrible things.   People do sometimes do horrible things.  But despite everything I’ve said in this post about the way a bad caregiver can make life hard, making life hard is not the same as making life not worth living, and I worry so much about the adult children of parents who can’t realize that.  Because they either put their child in an overprotective institution situation or a pseudo-utopian farm community, looking for the perfect “placement” for the rest of their child’s life, with no consultation with what their child wants. Or they start talking murder.  And neither of those are acceptable.

And again – a shout-out to my caregivers for being amazing people who aren’t like that at all.  And by amazing I don’t just mean they’re decent, I mean they’re truly amazing and I feel lucky to have them.  I actually look forward to them coming every day, which is a far cry from when my first caregiver walked in the door and I ran outside and started frantically lining up sticks because I couldn’t stand someone in my house and felt like order needed to be restored by arranging sticks in pleasing patterns.  Another time I tried to hide under a chair, but only my head would fit.  Now, I actually look forward to people showing up, I look forward to our interactions, I look forward to joking about how disgusting my feeding tube can get, I look forward to sharing music with them, I look forward to all of it.  And that is what a good client/staff relationship can look like.

59 notes

6:18pm August 21, 2014

This happened in 2008.

karalianne:

This is the pertinent part of the blog post I wrote about the time I was “staffed.” (The boyfriend/SO I mention is now my husband. Awww.)

I’ve put it behind a Read More because some of it could be hard to read, but there’s no real abuse in this story, it’s more of a WTF moment than anything else.

Read More

Yes this entire thing is the essence of staffishness.

8 notes

6:10pm August 21, 2014

lichgem:

madeofpatterns:

youneedacat:

STAFF AND CLIENT

That has always been my title for this photograph, and it’s the only reason I have kept the photograph for so long over the years.  I don’t even remember who she was.  I just remember she was a staff person in an afterschool program I went to, for kids who were in the system.  And that this photo is the perfect embodiment of the difference between staff and clients — in power, in body language, in facial expression, in everything.

I swear I’ve seen dozens of photos like this.  With staff smiling radiantly at the camera, trying to look happy and pleasing and helpful.  And the client just kind of sitting there maybe trying to look at the camera but not a whole lot else.

I don’t know how many of you know the body language differences I’m describing here.  I don’t know how many of you can pick up on the social dynamic I’m trying to describe.  But I’m hoping that some people will, because this is one of those things I’ve seen over and over — I’ve seen entire walls at agencies plastered with this kind of picture — but I’ve never seen anyone say “Hey this is kind of weird” or “Don’t you find that a bit unsettling?”

I’m the “client” in this picture, if that’s not obvious.  The one with the long dark hair and the light brown dress.  The staff person has impossibly light blonde hair and a white shirt.

I really, really hope other people can see what I see in this picture, because so often I get blank looks when I try to show people offline what I mean.  Then again most of the people I show offline are staff…

I wish staff wouldn’t do this, in pictures, but I don’t know how to tell them what they should be doing.  Other than not putting on an artificially cheery facade that says “look how well I take care of these people” without ever saying it.

I think it’s partly how… it’s a picture of the staff member showing a picture of ~their kid~.

It’s not a picture of the person with a disability, and it’s not a picture of the staff member. It’s a picture of showing. But that’s only part of it.

To me it’s the contrast that stands out, like you said, Mel: how the staff person is trying to seem radiantly happy, while their client is just sort of… present. The staff person isn’t in tune with whatever’s going on with you, and you don’t look like you wanted to take a picture. It was a bit subtle for me at first, though, until I sat and looked at it for a few seconds.

Edit: I realize ‘in tune’ has different connotations than I was going for. I mean more that she’s oblivious or doesn’t care.

Yeah it’s a really weird thing and I see it all the time.  It’s even more obvious when you go into a case manager’s office and you see an entire wall full of photos like that tacked up on a bulletin board or something, all looking exactly the same.

99 notes