You can tell a lot about a DD agency by how they treat their disabled employees.

There are only a few developmental disability agencies in the area. In California, there’s tons of agencies. Here, I only know of the in my local area. I only have experience with two. Both of them employ some people with developmental disabilities.  But they couldn’t possibly do it more differently. 


Walking into one office, I saw a man with a developmental disability delivering the mail.  He had a staff person with him directing him where to go.  He clearly — very clearly, from the standpoint of someone with similar problems — had a movement disorder that made it hard for him to stop going in a direction once he’d started.  So he bumped into things and people a lot.  He bumped into me.
His staff person immediately started shouting at him and demanding that he apologize to me and pay more attention to where he was going and on and on and on.  He just stood there looking more and more upset.  I knew, and he knew, that there was nothing he could’ve done different.  And that was only one of many such incidents I saw there.  Disabled employees were not considered the same as nondisabled employees at all. 


Then I went into this other DD agency.  It was an agency that helped DD people with two things:  Self-directing our own care (something I was looking into), and finding gainful employment.  So maybe it made sense that they’d be different.  Or maybe not.  I don’t know.   


All I know is that every time I walked into the place, I saw a woman with a developmental disability answering the phones, typing at the computer, and doing all the work a secretary normally does, without any indication that she was any different from the nondisabled secretaries. 


That told me that this agency was serious about their mission to find employment for disabled people.  And also that they truly respected us.  They never talked down to me.  If I came in unexpectedly, they would drop everything and come talk to me about what I needed. 


I didn’t end up going self-managed with my care, although I still might do that someday.  But I have to say that I was incredibly impressed by the difference in the two agencies.  This isn’t the first time that I’ve seen such a difference between agencies, reflected in how they treat disabled employees.  And this all happened years and years ago. 

 
But I thought people should know that this is something you should look for, if you’re scoping out agencies to give you disability services:  If there are disabled employees, how are they treated?  Do they seem like just another employee, or are they treated like “clients” who just happen to be doing work (worse still if it’s “make-work”) in the office?  Do they get publicly humiliated if they make mistakes, including mistakes that they clearly can’t help making?  If they have a job coach or another staff person assisting them, does that person seem to be basically running their life, or are they providing assistance in a respectful way so that the person can do their job?  Is there constant tension in the air between the DD person and their job coach?  Does the job coach get on their case for things that aren’t even problems (like rocking, quietly humming, etc.) while nondisabled people get to be much louder, much more disruptive, and nobody treats them badly for it? 


It’s things like that that can tell you a lot about an agency without them even knowing what they’re showing you.

Sometimes you think someone whose job is to provide you w/ accommodations w/r/t your disability is treating you really really really well & is ultra-supportive but in reality they’re just providing you the bare minimum of human decency, but you’re so used to receiving less than that, it feels like you’re royalty.

Benny has what he thinks is the best job ever. He and Charlie and Kevin have a small company that trains rescue dogs to be service dogs. Yes it’s heartbreaking the shape some of these dogs come to them in, or when one is too far gone to be this rigorously trained (then they find a find a no kill home for the animal). But the joy of connecting a dog with an owner is incredible.

Benny is mostly responsible for matching up the dog to the owner, and helping them learn how to work together. It can be an intensely personal experience as he is always attached to the dogs and becomes pretty attached to the human. He gets Christmas cards and photo updates all the time.

Only there is this pitbull mix they’ve now had with them fully trained for two months. He is a wonderful dog, kind, and so smart, but also a little stubborn - only no one wants a dog that has even a little bit of pitbull in them. Charlie thinks they might have to farm him out, but Benny begs for two more weeks, as they a few more appointments set up.

One day this giant of a guy comes in, in a impressive tailored suit. He explains that he isn’t there for himself but for his brother. They’ve looked at service dogs before, but his brother has never found a match that suited him.

Charlie asked the purpose of the dog. The guy explains there were a car accident and Dean has mobility issues. Charlie walks him through the dogs and the guy doesn’t seem impressed.

Benny asks, “Why hasn’t he connected with a dog before?”

“Apparently service dogs are too helpful.”

Benny could hear the snarky air quotes being used.

“Tell your brother to come in, we’ve got the perfect dog.”

3 days later, the tall guy was back, with a guy wheeling along in a black wheelchair covered in skulls and band stickers. They were clearly bickering but in a happy brotherly way.

When he got closer he could see the man was gorgeous, he held out his hand, “Benny. I’m the guy to make sure that you and your dog can work together.”

“Don’t need a dog.”

“Maybe the dog needs you.” Benny replied.

“That was all sorts of lame.”

“Dean.” the other guy hissed, but Benny just laughed.

“Come on, meet Hagrid.” Benny lead Dean into the back training room where the pitbull was waiting. Benny signaled and the dog came over and sat at his feet. There was also some boxer in him, which meant that sitting he was at Dean’s shoulder.

“Try giving him an order.” Benny suggested.

Dean shrugged, “Get me those mittens on the table.” Hagrid looked at Dean, looked at the wheels under him, at the table and huffed. Sat down.

Dean grinned and rolled himself over, picking up the mittens. He saw a newspaper on a bookshelf, slightly higher than he could easily reach. “How about that?” He asked pointing.

Hagrid went over and put his paws on the shelves and grabbed the paper, bringing it over.

“Okay yeah, this dog is mine.” Dean pet Hagrid and Hagrid ignored his training and licked Dean’s face.

Benny laughed at the joy on the face of mutt and man. “I’ll be working with you two over the next couple weeks, get you adjusted to each other, help you set up your house for the dog.”

“Guess I should give you my number then.” Dean smiled.The smile grew bigger as the dog leaned into him.

“Guess you should.” Yup, Benny loved his job. 

Can anyone help Katerina?

I don’t have the ability to help other than using the fact that I have a lot of followers here and am well-known in certain segments of the Internet.  So if anyone at all is able to help a multiply disabled woman who’s had her services canceled and further services denied and abused through neglect and people have lied to Adult Protective Services and it’s a mess.

If anyone can help please go here:

http://textualfury.wordpress.com/2014/02/08/the-time-i-got-naked-on-the-internet-nsfw-and-trigger-warning/

TW, and NSFW, both apply to her post (at least the NSFW part applies to the naked YouTube video where she documents the damage to her body, some of which reminds me of the awful rashes I used to get before I got my breast reduction, so I can attest that those things are painful without treatment and sometimes even with it).

I used to talk to her years ago, she has a lot of similar issues to mine, and nobody deserves this but it hits harder when you know the person and please if anyone can help, please do.

Oh and sorry for spelling your name wrong but I can’t figure out the right spelling due to trying to do a lot of things at once right this minute.  Very sorry.

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My drawn self-portrait for No Shame Day. I have a wide collection of illnesses and conditions/disorders. On my better days, I can take the rollator out to walk my someday service dog.

I’m not really that pleased with how this turned out (there’s too much empty space? or the background is more lackluster than normal?) But I like the way Penelope turned out, so I’ve included a crop of just her portrait.

I’m spending the day drawing other people though so I didn’t want to spend extra time making myself like this picture. I’ve finished a couple of people’s portraits now, and I will queue them, and then when I wake up I’ll draw the rest!

ell needs your help plz

ell is a nonbinary/androgynous intersex trans woman whose (non-sex work) professional opportunities dried up whenever she stopped hiding her self at work. survival sex work has been a part of her life since she was way too young to go into details about this circumstance. sex work can be really empowering but it is also a refuge of last resort when there is No other choice or opportunity or possibility for survival. she is only able to carry three condoms in her purse and no self defense weapons because trans panic defense is still legal in her state along with police sanctioned whorephobia which interacts with transmisogyny in ways you literally cannot imagine if you are not in a working gurl’s shoes. she has been locked out of all social services including disability for her ptsd, medical assistance and obamacare due to mismatches between her name and gender markers on a bunch of different documents she is not authorized to change without surgery she cannot access without insurance and boatloads of cash she doesn’t have, can’t get food stamps and cash assistance, her doctor and psych cut her off of her psych and hrt meds by calling her “noncompliant” whenever she called them out on endless invasive molesting exams and not actually being responsive to Any of her treatment needs, the atypical housing shelter she was placed in was more interested in protecting the creepo older resident who Sexually Assaulted her and accused her of Not Wearing Gender Appropriate Clothes than putting a safe roof over her head….

and now she has Two Weeks left to move out and can’t even put together the deposit and first month’s rent to escape homelessness. ell is Super Vulnerable and needs your help NOW. please paypal donations to agaglady@gmail.com or buy her tunes for pay-what-you-want at submistress.bandcamp.com and if you cannot support this way, Please share. gold stars and cookies for Everyone seriously i NEED allies right now like you can’t even imagine. g-d bless, thanks :*

Petty? Really?

Today, after a very unpleasant phone call, I was called petty – not once but three times – by a woman paid to handle the issues I was calling about.

And who knows, she may be right. Maybe my expectations are too high, but is it really too much to ask that I find my kitchen in the same condition when I get up as when I went to bed?


The biggest issue is them moving things around. In the home of someone who uses a wheelchair to get around, and who can’t just stand up or get on a stool to reach things that are too high, that’s a big no-no. I would have thought a lot of it is also common sense. Surely, if there’s one stack of plates of one kind, and another stack of plates of another kind, and you’re holding a plate of the first kind… surely you’d put it on the correct stack? But, no. It goes on top of the other stack, teetering away there ready to fall out and get smashed to smithereens. And I can’t clean it up.

Thankfully, that last bit hasn’t happened yet, but I’ve already got more than enough evidence that using a grabber/arm extender to reach things on the top shelves is a bad idea. Salt over the worktops and floor, anyone? So it’s really not a stretch to imagine the damage that moving these things can do.

But, apparently, that’s my problem. She didn’t even let me finish the sentence regarding the safety issue, but went right on to say, “I think you’re just being petty now. Really, Emma, you’re just being petty.” Well, excuse me for being concerned about the safety of myself and your carers.

The worst part? I wouldn’t have bothered calling if not for my support worker encouraging me not to put up with it. The best part? When said support took the phone and started asking for names and details. “Social services? Oh, um… I’ll see what we can do.”

I didn’t even get to bring up the third issue, because she was too busy calling me names. By the time she was done, I was shaking and in tears, but their records tell them that I can’t communicate well over the phone (or face to face, actually). The more I think about how I was just rail-roaded – bullied – the more furious I get.

Only, I also feel bad, because they’re all lovely women. Some of them don’t know the difference between light-hearted teasing and insults, but they all mean well. I’d just wish they'd think first.

School

So I have to write a Test Accommodations sheet for my test coming up.

Basically I have test in separate room, so I can sign while I take the test. I have two tests that same day.

On my sheet I have the option of “Phone” or “Email” I have told them countless of times to email me when something comes up for change. Can you take a guess at what they decided to do? If you guessed correctly, they called me. Well, I have no idea wtf they said but it seemed urgent. Now I have to wait until my dad gets home so he can tell me what the voicemail said…

Another thing, my Disability Coordinator is fabulous! She faces me and does whatever she can to accommodate me. She actually emails me, not call me.

 But when it comes to the receptionists … oh god it’s a nightmare. Every single time I go in to Student Services to receptionist, they are soo quiet, face away from me. A few times when I was sitting in the waiting area, studying, one of the receptionist was trying to talk to me. I didn’t hear them until someone else told me “Receptionist 1 is trying to talk to you” I look up and I see like an annoyance face. Every single time that receptionist talks to me I don’t hear them at all. I ask to repeat then there’s the whole annoyance/impatient.

3

For once in my life I’m happy. even though my body tries to tell me to be anything but. I finally received one huge blessing, my service dog Gracie. She is a God sent angel and I couldn’t be happier <3 the day after meeting her the best news came another blessing.. I was approved for disability, after only 2 months (guess you know you’re really chronically ill when you get approved so quick lol) of course I miss eating food and I miss drinking fluids and I hate TPN and my central line and I’m not looking forward to getting another G tube for venting and my wheelchair can be a bother BUT HOLY CRAP I’m happy! I have met someone amazing who understands because he’s a spoonie too and I’ve made amazing friends and have tons of cosplay plans and I’m surrounded by the most amazing spoonie community and no matter how much my health declines nothing can take away my ability to love and feel happiness and THAT is more than enough of a reason for me to fight!

Every time I get an email notification I rush to read it, hoping that it’ll be from my case worker at Services for the Blind.  She is supposed to be back in the office today but who am I kidding, my phone calls and emails aren’t going to be answered, these people work until noon and then peace out for the rest of the afternoon.  I think I’m going to end up calling her boss again if I don’t here from her by tomorrow.

Meeting with the Disability Services Lady

I was able to schedule a meeting with the woman who approved my housing accommodation to discuss my disability services. I’m quite nervous but I’m definitely not going to hide it around her. I’m going to be as open as possible about my anxiety over moving and living on my own considering my conditions are scary on their own. Luckily, I scheduled it before orientation, that way we can talk about how I’m going to register for classes. I’m kinda excited but nervous. If any of you have suggestions, whether you have been in my place or not, I would gladly take them.